View allAll Photos Tagged Cleftlip
Carla underwent cleft lip repair by the interplast Cusco, Peru surgical team last year, and was treated this morning for her cleft palate, which was wide open. It is common for patients to have a cleft lip repaired one year and a cleft palate the following year. By seperating the surgeries, Interplast doctors give the child time to heal and avoid keeping the patient under anesthesia for too long.
One-year-old girl held by her smiling mother. She was born with a bilateral cleft lip and cleft palate, and right microphthalmia (small orbit and undeveloped eye).
A typical surgical approach to helping this child would be:
1) to close her cleft lip first, to allow her to speak and eat better, then
2) return a few months later to close her cleft palate (hole in the roof of her mouth) through a more complex surgery, again to enhance speech and eating, plus limit ear, sinus, and respiratory infections,
3) remove the remnant of the existing right eye, perform an orbital (eye socket) reconstruction, and place a fat graft aimed to stimulate growth inside the orbital space,
4) place a "globe prosthesis" (space holder for the eye socket) as the child hopefully grows more over all, and
5) place a customized artificial polymer/acrylic eye, perhaps in time for her to begin school.
There is much hope for this intelligent, happy toddler!
FACE the Challenge, Inc. (FTC) is a humanitarian non-profit organization based in Centennial, Colorado, USA. Its all-volunteer teams and representatives have been traveling to various parts of the world to provide facial reconstructive surgeries free-of-charge.
Since 1994 FTC has been taking specialists to HCMc/Saigon to provide care for those with great needs. These long trips take about 40 hours of flight time (round-trip) and cover about 20,000 miles (round-trip). It still is gratifying and worth all our efforts!
Brochure Cover, Humanitarian Organization
"Surgically Correcting Facial Deformities of the World's Youngest and Poorest," 1993-present.
Representative images (mostly) taken by Ginger H. Robinson, BSN, RN, particularly in Saigon District 1, HCMc/Saigon, Southern Vietnam, Southeast Asia.
Caleb’s Story—Written by his mom, Stacy
There are many different emotions a mother and father go through when their child is born with a disability, but the emotion that most often gets stymied in the midst of tests and uncertainties is the simple beautiful joy of having a baby. Our son Caleb was born with Down syndrome a few months ago, and I did not wish to hide or ignore the diagnosis, but I found it difficult to celebrate as countless tests and pending results kept knocking at the door. Each time I looked at my baby boy, all I could see was a marvelous creation. He was not like any other baby—he was uniquely himself and he was altogether mine. Having a child with disabilities gives you a new cup by which to measure; a simple smile is no longer simple, it is a triumph and a glorious sight, and a common milestone on the doctor’s chart becomes the very corner stone of great hopes. We do not know how far our children will go, but we do know the depth of our love. I cherish my little boy each day and don’t waste the present worrying about the future.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Katie
At 19 weeks of her second pregnancy, Julie and her husband, Andy, were excited because they were having an ultrasound to learn the sex of their second child. They never imagined the test would reveal anything more dramatic; however, they were told their baby would be born with spina bifida.
Their daughter, Katie, was born December 26, 2001. She is now 10 years old and has enjoyed "dancing" with the help of her wheelchair since the age of 3, inspiring other children with disabilities to dance as well. Katie is a straight "A" student who also plays baseball, soccer, takes music classes, sings in the church choir, and goes to a spina bifida camp each summer. “There is nothing she has wanted to do, that we haven't been able to get her to do with some modifications,” says Julie.
"Do I wish she did not have spina bifida and could run and play like other children? Yes. Life is tough for her. Simple things like pulling up her own pants can take a half-hour. She has had 15 surgeries and numerous hospitalizations because of infections," says Julie. "But our family has learned to appreciate the small things in life more. She has been a blessing to our family."
"I encourage other women to take 400 micrograms of folic acid if you are able to get pregnant, even if you are not planning a pregnancy. Studies have shown that it can help prevent spina bifida in many cases," said Julie. "If you've already had a child with a neural tube defect, it is recommended you take 4,000 micrograms of folic acid. That's what I did, and my next two children were not born with spina bifida."
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Keaton’s Story—Written by his mom, Paula
My husband and I were both 40 years old with three beautiful daughters who were quickly becoming teenagers. Something possessed us to think that if we had another child, our nest would not be empty as soon and therefore we would not be “old.” So we did just that, well, the having the child part.
After 36 REALLY long hours we delivered our son at home with the help of midwives. My main concern was that his feet were turned in, but my husband was concerned that he looked like he may have Down syndrome. The midwives along with a family physician who was a member of our church assured us that we didn’t have anything to be concerned about, because he had good muscle tone, a strong cry, and did not have the single crease across the palm of his hands, which most babies with Down syndrome do. They pointed out that he did not look like “a typical Down syndrome baby.”
After 7 long months of denial, we submitted to a blood test, and it confirmed that our handsome little boy indeed had Trisomy 21. We were blessed with an amazing geneticist who encouraged me to raise my son in the same way I had his 3 older sisters, to expect great things. I remember asking “what do you think of my son?” and his reply was “he is a great little guy.” I countered with “no, I mean, what will he be able to do?” His reply to that was “he is the only one who will be able to show you that, he will be able to do anything any other kid can do, it will just take him a little longer.”
Keaton required surgery to repair club feet and open heart surgery to repair a heart defect, all before he was 2 years old. I can remember wondering at times if he would ever walk or talk. He is now 13 years old and keeps us all entertained with his dancing and singing. He sings the Star Spangled Banner every year for his school musical and anytime he receives an invitation, whether for a school board meeting or a high school volleyball game. He will tell you he is a “rock star.” He is happiest when he is making someone else happy by helping or serving.
Each phase of Keaton’s life has brought new challenges, and God has given us the wisdom to get through each one. As we ease in to the teen years, it brings a brand new bag of questions and forces this mom to think once again about how I will survive an empty nest. I have to tell myself we have made it this far, God will get us through the rest.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Support Dental Programs for the Marginalized Communities in India pages.razorpay.com/dentalcare
Write a mail to us : support@trinitycarefoundation.org
trinitycarefoundation.org/preventive/outreach-health-prog...
Even monsters need love - the other part is Angrboda wondering if Pazuzu is gonna eat her (in the not funny way)
Sonja Rasmussen is pictured with her brother, Mark, who has Down syndrome
Fifty-two years old, employed, living independently, an active member of his community -- it would have been hard to imagine that these words would ever describe my brother Mark when he was born with Down syndrome in 1960. The doctor’s advice at the time was typical of the era. "Institutionalize him,” he said. “It's best for your family." My parents ignored that advice, took Mark home -- and found a new doctor.
Our family is justifiably proud of all that Mark has accomplished since then, often confounding the experts of the day. Our small town in Minnesota didn’t have any educational opportunities to offer Mark, so initially he was transported to a distant town for school. Over time, our local school system was able to accommodate him. At first only segregated classes for the "mentally retarded" (a term now considered to be offensive) were offered – and kids were divided into classes based on whether they were labeled as "educable" or "trainable" (also now obsolete terms). But by the time Mark reached high school, he was included in some regular classes and participated in extracurricular activities, even serving as manager for the wrestling team – something that was practically unheard of at the time for a student with an intellectual disability. After high school, Mark moved into a brand new group home in our town. Three years later, he moved into his own apartment. He’s been living independently ever since, and working steadily at a local fast-food restaurant.
Mark has enriched my life in countless ways, including guiding my career path. When I was in high school, I was alarmed when my biology teacher said the average survival for persons with Down syndrome was 16 years (Mark was 14 at the time). My first goal was to become a genetic counselor; then I went back for training to become a pediatrician and clinical geneticist. After joining the Birth Defects Branch at CDC, one of my first projects was to examine survival among persons with Down syndrome -- our study, published in Lancet in 2002, showed that survival was 49 years in 1997 (as estimated by median age of death from US death certificates).
While I’m delighted with Mark’s many personal triumphs, I’m also aware that there are lots of challenges ahead. I know, for example, that a significant proportion of people with Down syndrome develop Alzheimer’s disease. Thankfully, Mark doesn’t show any signs of it, but we monitor him closely – a task that might be easier if there were more health care providers in rural Minnesota knowledgeable about adults with Down syndrome. And Mark’s work situation always feels a little bit shaky. Even though he’s been a loyal employee for many years, he’s often the first to have his hours cut when college students come home for the summer or when the economy struggles. It’s not easy.
Yet Mark takes all this in stride. He leads a happy and worthwhile life, proud of his work and secure in the love of his family and friends. Every day, he tries to do his best in everything he does – which, of course, inspires everyone around him to try to do the same. Mark’s quite a guy -- I’m lucky to be his sister!
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Ian’s Story – Written by his mom Jessica
Ian was born at 32 weeks with a condition called gastroschisis, a birth defect where his intestines stick outside of his body through a hole beside the belly button. At some point in my pregnancy, the defect in the abdominal wall closed itself around the intestines outside of his body, killing all the intestines that were outside. We did not know this during the pregnancy. When he was born, we found out that he lost ½ of his colon, 2/3 of his small intestine, the valve between his small and large intestine, and his appendix. I didn't get to see my son until the next morning and was crushed. During Ian’s 9 month stay in the neonatal intensive care unit, he endured numerous feeding issues and multiple surgeries to lengthen his bowels, remove obstructions, and save him from a perforation. It was the scariest time when we were told that our baby had a 50-50 chance to pull through the next 24 hours (which happened more than one time).
After an intestinal transplant in California, we finally went home on March 3, 2008. But, it was not easy at home. Ian was in and out of the hospital with infections in his line, the tube that carried nutrients and medicine to his body, almost every 6 weeks. We almost lost Ian to one major infection in September 2008. He got a mutated form of a blood bug called Klebsiella, and he went into cardiac arrest in the pediatric intensive care unit (PICU). He then got a clot in his heart, his lungs collapsed with double pneumonia, and his kidneys went into failure. Everything looked as though we were losing him, but with a miracle, his blood clot went away overnight and he started to pee hours before having dialysis. He spent the entire month of September in the PICU, but when we did come home, everything just started to click. Eventually, doctors removed his line on December 31, 2008.
Since then, Ian has been receiving a monthly blood transfusion and injections to help with his severe anemia, which was caused by him having to be on heavy duty antibiotics for three years. Ian will need to have more intestine removed this summer to try to stop the bleeding inside. This leaves us very uncertain of the future. We do not know if Ian will need to go back on a feeding tube or have his line reinserted after this surgery. Ian is currently in Kindergarten and receives special services for speech and development because of his long term hospitalizations. He loves school, his dance club, and his friends. Despite everything he has been through, he continues to endure with a smile—he is a true Warrior!
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Shandler’s Story – Written by his mom, Tricia
Our twins, a boy and girl, were born 6 weeks premature in 2002. Our son, Shandler, was born with two congenital heart defects: coarctation of the aorta and bicuspid aortic valve. Coarctation of the aorta is a narrowing of part of the aorta (the major artery that supplies oxygenated blood to the entire body). Bicuspid aortic valve is an aortic valve that has two leaflets, instead of three. Shandler was fairly small, weighing only 4 pounds. At four days old, he began to have difficulty breathing. The doctors detected a heart murmur, and diminished pulses in his legs and feet. Through echocardiography (ultrasound of the heart), the congenital heart defects were found. Three days later, the heart surgeon repaired the coarctation. There is no intervention for his bicuspid aortic valve.
Our family was absolutely terrified that he wouldn’t survive major heart surgery because of how tiny he was. He did well for about two weeks after surgery, and then he developed complications (a risk with any surgical procedure). Fluid collected around his lungs, making it difficult for him to breathe. He required a ventilator to assist with breathing and chest tubes placed to drain the fluid. After six weeks of no improvement in his condition, as well as developing bacterial meningitis (which almost took his life), he was taken back into surgery. Within 24 hours, he was able to breathe on his own again. After 11 weeks in the newborn intensive care unit, Shandler was finally able to come home, to be reunited with his twin sister and live with our family. However, he was discharged with a feeding tube. This was necessary because his heart condition caused fatigue during feedings, and he was not able to take the full amount necessary by mouth.
The past 10 years have had their ups and downs for our family. Shortly after coming home, Shandler developed a condition called dysphagia, due to severe acid reflux. Dysphagia is a problem with swallowing. Shandler started refusing to eat. He later had a feeding tube surgically placed, which was how he received his nutrition for several years. Just before turning 4, he was finally eating and drinking enough to have the tube removed.
His heart condition made him extremely fragile the first few years of life. As an infant, he was hospitalized for several weeks (in critical condition) in the pediatric intensive care unit, with complications from flu. At age 2, he contracted respiratory syncytial virus (RSV) and was hospitalized for 1 week due to breathing difficulty.
Seeing Shandler today, you wouldn’t know he had such a rough start in life. Although he is small for his age, he is able to run and play with his peers, and eats everything in sight!! However, he does require yearly follow-up by a cardiologist. Through echocardiography, they look for any signs of aortic narrowing again, as well as checking the function of his bicuspid aortic valve. Complications of bicuspid aortic valve include: congestive heart failure, leakage of blood through the valve back into the heart, and narrowing of the valve’s opening. The valve will require repair or replacement if this occurs. Shandler is never allowed to participate in contact sports (football, hockey and wrestling). Despite this restriction, he is a bright, happy 5th grader, who loves to play jokes on others (especially his sisters). He enjoys building things, reading Harry Potter books, and is a whiz in math and other school subjects. He will always have his “battle scar”, although he jokes that it “makes him look tough”!! We have been truly blessed to have Shandler in our family.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Hannah’s Story—Written by her mom, Leslie
My husband, Nick, and I were ecstatic when we learned that we were pregnant with our first child last February. The excitement grew when we found out that we were having identical twins, but it was short lived. The doctors diagnosed our girls as Monoamniotic-Monochorionic, or “mono mono,” meaning they shared the same sac with no dividing membrane and the same placenta. This type of pregnancy is extremely rare and very high risk, due to cord entanglement issues. We were given a poor prognosis and told that 80 percent of people in our situation would terminate the pregnancy. Nick and I plunged forward, hoping and praying for the best for our babies.
Unfortunately the stress did not end there. At five months of pregnancy one of our girls, Hannah, was diagnosed with Heterotaxy Syndrome causing several complex congenital heart defects, two of which were known as Total Anomalous Pulmonary Venous Return (TAPVR) and Pulmonary Atresia. We began seeing a pediatric cardiologist who informed us that Hannah’s condition was very precarious and would require a series of three open heart surgeries over the course of the first five years of life, the first of which would most likely be performed the day of birth. To complicate matters, Hannah would be premature and underweight, as she and Elizabeth had to be delivered via C section at 32 weeks gestation in order to increase their chance of survival due to their mono mono diagnosis. As a result, I had to spend the last two months of my pregnancy on the bed rest at the hospital for daily fetal monitoring.
Hannah and Elizabeth were born at three pounds nine ounces and three pounds fifteen ounces, respectively. They were immediately whisked away and after hours of echocardiograms, it was determined that it was in Hannah’s best interest to prolong surgery for several weeks in order to let her gain weight and increase the chance of a successful surgery. Nick and I were cautiously optimistic but painfully aware that a favorable outcome was not guaranteed.
Just three weeks later, Hannah underwent open heart surgery. After almost 12 hours of anguished waiting, we were told that the surgery had been a success but that the next 48 to 72 hours were critical. Literally as we were preparing to leave the hospital to go home that same night, Hannah’s heart stopped beating. The doctors were able to revive her and aggressively monitored her condition overnight.
Early the next morning, Hannah passed in our arms. Her surgeon assured us that we had done everything possible to save her but unfortunately her lungs could not support her heart condition. We are saddened beyond belief at our loss, but we believe Hannah is in a better place and we are comforted that she is no longer in pain or suffering. She was a fighter until the end and we will forever be grateful for the three weeks we were able to spend with our little angel.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Fenix and Bryton’s Story—Written by their mom, Janalyn:
I am a proud mother of four beautiful children: two boys and two girls. Both of my sons were born with birth defects. Fenix, the older of the 2 boys, has Down syndrome.
Things were rough when we first found out. My husband and I had little to no experience with Down syndrome. We were so scared about his future. He was hospitalized multiple times as a baby because of respiratory illnesses. Now he is a very energetic 9 year old who loves sports and music. He loves life. His future is very bright.
My youngest child, Bryton, was born with anophthalmia (missing eye) on his left side and micropthalmia (small eye) on his right side. Because of this, he is completely blind. Once again, our family was in a state of disbelief. Once the shock wore off and we were able to get Bryton the medical care and help he needed to succeed, we were able to come together as a family once again. Bryton is now 4 years old—he gives the greatest hugs and is always happy. We still have some challenges. His speech is delayed and he is just learning to walk. His laugh could brighten anyone’s day. We face many challenges as a family, but we face each challenge head on, not willing to give up or be knocked down. All my children deserve the best that life can give and that is what I am here for—to ensure that their lives are grand.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Anna’s Story—Written by her mom, Brooke:
When I was 5 months pregnant, my husband (shown in the photo with Anna) and I went in for our ultrasound. We were about to learn the sex of our little baby, and our hearts raced in anticipation and excitement as we patiently waited. Finally, the tech told us, “It’s a girl…” I smiled and looked at my husband for his reaction, which was also an elated smile. “…but it looks as though she may have some issues.” At first glance, she thought it may be an omphalocele, but she wasn’t sure. We were given the name of a local specialist who would be able to diagnose her defect correctly.
Two weeks later, we met with the specialist. He proceeded to tell us that the defect was not, in fact, an omphalocele, rather a gastroschisis, put us in touch with his colleague that specialized in this defect. The new specialist explained that gastroschisis is a birth defect in which an infant's intestines stick out of the body on one side of the umbilical cord. She made us feel as though this was a fairly common condition, and procedures that our baby would need were fairly simple. It was the recovery time that took the longest.
Eventually we were meeting with the specialist regularly. We also met with the doctor who would perform her surgery. He gave us a rough estimate of 6 weeks to 3 months before our baby would be well enough to be home with us.
Just as we were coming to terms with the upcoming events, I had a regular scheduled prenatal visit, and my doctor asked me if I was feeling the contractions I was having. I replied that I was, but they weren’t painful, so I wasn’t too concerned about them. I was put on bed rest at the hospital for the remainder of my pregnancy. As the long days passed, I received around the clock care from nurses, interns, on-call doctors, specialists and technicians. Finally, after about 3 weeks, our doctor informed me that our baby girl needed to come out. She scheduled my Caesarean-section exactly 30 days prior to my due date. We were so nervous and excited at the same time. We’d finally be able to meet our precious little girl, but we still felt helpless and unprepared for what would happen after her birth.
In the early afternoon of a February day, Anna was born. The doctor showed her to us briefly before handing her to the appropriate staff. We were told all of her large intestine was outside of her body, as well as a fallopian tube. Anna was bandaged carefully before being wheeled through the hallways of the hospital and over to the children’s medical center. Once there, her intestines were placed in a protective "silo." This “silo” was supposed to gently push her intestines back into her abdominal wall with the help of gravity.
After 3 days, the surgeon informed us that Anna was progressing quickly and was ready for her final surgery. They’d gently push the remaining intestines back into her stomach and stitch up her abdomen. Sitting in the waiting room while Anna was undergoing her surgery will remain to be one of the most nerve-wracking moments of my life. Luckily, it was over fairly quickly. Now came the waiting part. We had to see if she could tolerate the pressure of the intestines in her body, then work on being able to digest breast milk or formula. It was about a week before they attempted giving her my pumped breast milk through a bottle. She took to it quickly but would soon fall asleep or lose interest. Eventually she was eating a decent amount, and the doctors and nurses were pleasantly surprised with her very rapid progress. After only 17 days in the NICU, our little Anna was released and sent home with us. It was as if a great weight had been lifted off our hearts and shoulders. We no longer had to drive an hour to see her, no longer had to get updates from nurses, and we were no longer worried about when we’d finally all get to be together. Our little girl was home!
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Zach’s Story – Written by his mom, Amanda
I had two very active boys, two years and eight months old, when I found out I was four months pregnant, and that I was having another boy. It took me a long time to be happy about the pregnancy. I was 32 weeks along when we found out that our baby would be born with spina bifida. We were told that it was a very serious condition, that he would not walk, that he would have many other problems, and that he would have a “poor quality of life.” We left feeling unsure and afraid, yet we also felt hope and knew that somehow, everything would be okay.
Zachary was delivered at 37 weeks, as soon as his lungs were ready. Within 24 hours, he had surgery to close the hole on his back and two days later, he had surgery to have a shunt, or tube, placed in his brain to drain the excess fluid into his abdominal cavity. He did very well and was only in the hospital five days. At ten months old, he had to have his shunt replaced. He recently had surgery to stretch the muscles and tendons in his hips and ankles, allowing his legs to straighten out all the way. Zachary can’t walk, but thanks to amazing therapists, he is very strong and mobile in his own way. He likes to show-off in his wheelchair and “run” as fast as he can in it. He has had and will have many challenges and disappointments, but that is part of life for all of us. He has a strong spirit and by no means has a “poor quality of life.” He is our hero and our inspiration and we love him and his brothers so much.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Pablo’s Story—Written by his mom, Belen
Pablo is a bundle of energy. He can spend hours with his Legos, and he is a proud Cub Scout. He loves video games, bike riding, and taking care of his dog. In school, his favorite classes are P.E. and math. He has a really fun personality—at the start of the new school year he said he was only going to speak Spanish in class so that the teacher would not give him homework. As you can guess, that did not work. He can be mischievous, too. Once he brought a book from the school’s library titled How to Drive your Sister Crazy. And even though he teases his big sister, he believes she knows everything and is always asking her to explain things to him.
As much as he is like any other boy, Pablo is also different. He was born with a cleft lip and palate. During my pregnancy, I had a hunch the baby in my belly was a boy and that he had a disability. Still, it was hard to hear that news. While still pregnant, I had to see many specialists and received so much information that overwhelmed and depressed me.
Many people believe that kids like Pablo only need plastic surgeries to be okay. Depending on the severity of the cleft, these kids see other specialists too. In Pablo’s case, we started with an occupational therapist and a speech therapist (who he still sees weekly). We also meet with a speech pathologist regularly as well as an ear, nose, and throat doctor, a dentist, an orthodontist, and a plastic surgeon. By the age of 5, Pablo had multiple ear tube surgeries and dental procedures that required him to be put asleep. When he was younger, it was his constant earaches that worried me the most, but now it is the orthodontic work. He is brave and strong, but at his age, he does not accept all medical procedures and treatments well. And when he feels frustrated and in pain, he often blames me. But, he is also starting to understand that all of his wonderful doctors want the best for him. That part makes me happy. He is starting to ask doctors questions, and he is starting to ask about options. I know that one day he will be a wonderful role model for other kids with cleft lip and palate. And I love watching him grow and foreseeing the man he will become.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Teagan’s Story– Written by his mom, Brytten
In March of 2008, I gave birth to my second son, a big, beautiful, healthy baby boy, Teagan. Four days later, I found out that my big, beautiful, healthy baby boy was not so healthy. Teagan was diagnosed with a congenital heart defect (CHD)—hypoplastic left heart syndrome (HLHS)—basically, half a heart. My life as I knew it was over and my life as a Heart Mom began.
It is not the life I dreamed of while he grew in my belly for nine months, but it is my life nonetheless. Teagan's first year was the hardest year of my life to date. He had his first of three planned open heart surgeries at 7 days of age. We stayed at the hospital for eight weeks. When I finally brought him home again he was very fragile, on several medications, needed shots twice a day, was on oxygen, and had a feeding tube. We were home for a few months and by the end of July 2008, he was in desperate need of his second planned open heart surgery and some other procedures. We had a six week hospital stay this time and returned home shortly after his 5 month birthday. Our days were full of medications and tube feeds, oxygen saturation checks, lots of doctors, home health care specialists, and Early Intervention. We had to do all we could to stay healthy, so we had to miss out on a lot of family functions and stayed home a lot. Slowly but surely, I got used to my new normal and life as a Heart Mom.
Today Teagan is four years old and likes to tell people, "My heart is happy and strong!" He goes to preschool, loves to play with (healthy) friends, wrestle with his big brother, play super heroes, watch his shows, sing the current hits, swim, go on family vacations and ride his scooter. We are currently waiting for his heart to need a third planned open heart surgery, and we anticipate an eventual need of a full heart transplant. Teagan is currently on three medications a day. He is fed through his g-tube twice a day and the rest of his food he eats by mouth. We still try really hard to not get sick and we are extra aware of the germs around us. Teagan's first year of life was about keeping him alive, and now it's about letting him live! I feel so blessed to be the mother of such an incredible boy, he is truly a miracle! My life is richer than I ever could have dreamed of since the day I became a Heart Mom!
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Nicholas’s Story– Written by his mom, Amy
"Are you sitting down? Your baby has a serious heart defect." This phone call was supposed to be my mother, congratulating us as we brought our baby home for the first time. Instead, it marked the beginning of a whirlwind, which resulted in three hospitals, a helicopter ride and heart surgery, all in the first four days of Nicholas' life. Nicholas was born with a serious heart defect called critical coarctation of the aorta, a severe narrowing in his aorta cutting off blood flow to the lower half of his body.
The first couple of years of Nick's life were filled with caution, fear and anxiety, and they were consumed by doctors’ visits. This was compounded by the fact that there were always two other siblings in tow. The inside of my minivan was decorated with the hundreds of "good patient" stickers the three of them had collected. These stickers meant Nicholas had made it another day.
Truthfully, Nicholas is a poster child for successful surgery. He has done so well that the doctors’ visits have tapered off to a bi-annual cardiology visit. He is able to participate in sports with soccer and swimming topping his list, although hip-hop dancing is his favorite. Most days, it's easy to forget that he has a serious defect. Yet, occasionally, I catch myself wondering what his future holds. Until recently, children with severe heart defects didn't survive and there is a huge gap of information about adults with heart defects.
There are still questions: How? Why? What's next? No one really knows. I do know, that I will do everything I can to make sure he lives a long and healthy life.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Jake’s Story—Written by his mom, Kate:
When the ultrasound technician said, “Well, I see something that we need to discuss,” my husband squeezed my hand. This is what we’d been dreading. A congenital heart defect had shown up in the last several generations of his family, taking the lives of his uncle and brother. So when the technician said “it looks like you son has a cleft lip,“ we actually laughed out loud. This was clearly not the reaction she was used to. Once the initial relief wore off, the reality began to sink in. Our son was different. His condition wasn’t life threatening, but his young life would be filled with surgery and pain, therapy and frustration, bullying and exclusion. I grieved. And then I prepared to care for him. I should have prepared to care for myself too.
When Jake was born, the doctor held him up briefly, and then he and his twin sister were whisked away to the NICU. Everyone told me once I saw him I’d instantly fall in love with that tiny wide smile. But that’s not the way it happened. Jake was a difficult newborn who would arch, scream and fight. I began to panic before every feeding. I don’t know if it was because I didn’t get to hold them for the first two days, or because I wasn’t breastfeeding, or because of a million other factors, but I wouldn’t bond with my son for another two months. Whatever the real reason I had trouble bonding with Jake, I felt it must be because he was different, and I was a horrible person for not being able to love him. He deserved so much better than me. For the first few months, I lived in a haze of guilt, shame and anger. I felt I had to hide these awful feelings and pretend like I was the strong, loving mother I was supposed to be. There was so much help available for my son. I didn’t even know to look for help for myself.
Now, I have a fantastic support network of online forums, a local cleft parents’ group, and several close friends I’ve met through this experience. But it took me a long time to find them all. I had to work through the confusion of emotions on my own. To ease my feelings of guilt, I wrote and illustrated a picture book about a young bear who wonders if his mama bear loved him before his lip was repaired, or if she loves him now. I also started a doll clinic where we make dolls with clefts and repair scars. I’ve found peace in helping other parents through the difficult first year of the cleft journey. There is a clear treatment path for children born with clefts. Their needs are obvious to see. But the needs of their parents can get pushed aside as unimportant, often by the parents themselves. As I’ve told many struggling parents “to care for your child, you need to care for yourself first.” That’s easy to say, but difficult to do. It feels selfish. Over the last two years, I’ve had to learn how.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Eli’s Story—Written by his mom, Jodie
After 4 years of marriage, we thought we had it all figured out. We had finished college, bought a new home, and we began to start our family. But due to reasons unknown, that served to be quite the challenge for us. Our first pregnancy resulted in painful miscarriage. Then we experienced fertility problems. We assumed adoption would be our fate.
With our last fertility treatment, we achieved success! Several weeks later, our doctor found two healthy beating hearts on the ultrasound screen. However, complications arose very quickly. About midway through, we were given devastating news. We were told that we were having twin boys, but that Twin A had been diagnosed with spina bifida, a neural tube defect. We left our doctor’s office in shock. But after a few days, we began to prepare a place for a special needs twin and his healthy brother. On August 3rd we delivered: Elijah “Eli” Cole 6lbs 3oz & Walker Daniel 5lb 7oz.
As planned, Eli (Twin A) was rushed to the local children’s hospital upon birth for observation by their Spina Bifida Team, and Walker remained with me. Eli’s MRI results were worse than we thought, and he had multiple problems associated with his spina bifida. We learned that if he survived, our baby would never know how to eat, how to speak, or how to breathe on his own for the rest of his life. He would never know us, his parents. We immediately felt a rush of strength that God was preparing us for what was to come. We met with an organ donation organization so Eli might be able to give the gift of life. A representative informed us that Eli’s heart valves could save possibly two other babies. We planned the removal of his ventilator and prepared our entire family to say their goodbyes.
On August 6th, we watched as his ventilator & monitor wires were removed. We were told to only expect minutes with him. But against all odds, Eli kept breathing for fourteen hours. Our doctors encouraged us to transport Eli from the local children’s hospital to the hospital where his twin brother was so that they could be together. Once Eli's hand was placed onto Walker’s little body, Eli's color began to return and a slight smirk came across his face. We saw proof of the power of twins. And for the first time, we were finally able to enjoy our Eli, celebrate his life, and mourn peacefully, as a family.
Eli passed away in our arms later that evening, after an amazing 31 hours after his ventilator was removed. Those 31 hours gave us a lifetime of peace. Throughout this journey, we witnessed unbelievable strength, compassion, and the good deeds of friends, family, and medical personnel. We cherish each day we have with Walker and remain in constant awe of God's plan for our lives.
On August 8th of this year, as we were mourning the 1-year anniversary of Eli’s death that day, we found out we are expecting again. We found out that this miracle baby is a baby girl, whom we have named “Ellie”.
We can’t wait to share Eli’s life with Walker & Ellie. I want them to know firsthand in the power of prayer, the attribute of hope, and the Gift of Life. And I want them to know that their big brother was a “lifesaver”.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
These images are cross sections of the upper lip taken by high resolution ultrasound in order to visualize the orbicularis oris muscles—colored in the images. Some of the muscles are smooth and continuous, some have breaks or other defects. We hypothesize that these defects represent a minor manifestation of the risk genes for cleft lip or cleft palate, and help to explain the reduced penetrance seen in families of individuals with these common birth defects.
This image was chosen as a winner of the 2016 NIH funded research image call.
This image is not owned by the NIH. It is shared with the public under license. If you have a question about using or reproducing this image, please contact the creator listed in the credits. All rights to the work remain with the original creator.
Credit: Mary L. Marazita and Seth Weinberg, Center for Craniofacial and Dental Genetics University of Pittsburgh
NIH funding from: National Institute of Dental and Craniofacial Research (NIDCR)
Jude’s Story—Written by his mom, Nicola
We were overcome with relief and joy when Jude arrived in 2004. A few weeks earlier, we had learned of the loss of his twin sister Holly and that Jude himself was suffering from a birth defect called an omphalocele, a condition where abdominal organs stick out of the belly button –in Jude’s case, his liver. At 10 hours old and weighing only 4.5 pounds, his tiny body was operated on to put his liver back inside his tummy. It is impossible to describe the anxiety and helplessness we felt as parents watching him being wheeled into that operating room. A couple of hours later, we heard it was a success, and his recovery thereafter was amazing. Within 24 hours, the doctors had stopped all pain-killers because he wasn’t complaining! In the NICU we watched him slowly graduate from intravenous feeding to feeding tubes to being able to drink from a bottle, and he’s never looked back. He has had additional surgeries for other minor abdominal wall problems and remains smaller than his peers. Nevertheless, his resilience to life’s challenges remains. Nothing keeps him down! For us, he is a constant reminder to us of how precious and wonderful life is.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Ashley’s Story—Written by her mom, Kayte
Ashley was born in 2005 with a condition called gastroschisis, which caused her intestines to be outside of her body. The beginning of her life was filled with surgeries and tests, setbacks and worry. She caught an infection in her central line that nearly killed her, and she needed a special transfusion and lots of strong antibiotics to keep her alive. It seemed so unfair that such a tiny person would have to endure so much, but she was a fighter and soon was able to come home. I will never forget the way she looked at the sky with silent awe the first day she finally left the neonatal intensive care unit, or how scary it was at first to have her home without the constant beeping of machines to monitor her. She has always held a sense of wonder and curiosity about the world, and Ashley has a resiliency that other kids her age don’t possess.
Seven years and a few more surgeries later, Ashley is doing really well. She is smaller than other children, which is normal for gastroschisis survivors. She will always be at risk of intestinal kinks and blockages, which makes every stomach bug or tummy ache a worry. She is also hearing impaired from an additional birth defect called microtia. Although her life was initially filled with challenges, Ashley is blossoming into a remarkable young girl who has inspired countless other gastroschisis families with her story.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Joshua’s Story—Written by his mom, Candy
Joshua Aiden, 3, was born with a cleft lip and palate. Other than the fact that he looked a little different, he was just like any other healthy baby. He had his first surgery at only 3 months old. Surgeons repaired his lip and after the surgery, it looked so good. But, after only three days, the sutures starting coming out and his lip reopened. Joshua had over 14 heartbreaking surgeries over the next three years. His palate repair healed as planned, but not his lip.
Our miracle started at the mall, while taking Joshua’s birthday pictures. A professional baseball player named Mike Adams approached us about Joshua and asked why his lip had not been repaired. When we explained our situation, he asked if he could help us. Because of this, Joshua received a special surgery using a technique that had not been used on Joshua before, and this time the lip did not come apart. This has completely changed Joshua’s life and ours. As parents and grandparents, it was hard to watch Joshua undergo so many surgeries and procedures. We only wanted Joshua to be healed and start living his life without being stared or laughed at. The first time Joshua was able to drink from a straw or even blow bubbles came just a couple of months ago. And yes, I cried tears of joy, because he was so excited that he could drink from a straw. He said “Look NaNa, I can do it. I can really do it. I am drinking from my straw.” These are just a couple of things you would not consider important until you see all of your friends and classmates doing it and knowing that you can’t. Today Joshua can drink from a straw, blow bubbles, kiss and most of all – smile. Joshua will have a few more surgeries in his future, but this was the one that has changed him forever.
Babies are born with cleft every day, here and around the world. I know how hard it is to see your child be treated differently just because of the way they look. I do not let a day pass that I don’t share our story. It is my prayer that each and every baby born around the world with any form of cleft will have a chance to smile just like Joshua has.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Male fetus of consanguineous marriage. Weighed 570 g at 21 weeks; had cleft lip and polydactyly involving bilateral hands and feet.
Cade’s Story – Written by his mom
My son Cade was born April of 2000 with a severe case of cleft lip and palate. I didn’t learn about Cade’s cleft during my pregnancy, and after his birth, I had a lot to absorb and learn very quickly. Even though at first we were devastated and scared, my husband and I immediately embraced the challenges we knew we faced, and we were just as proud of our new son as if he had been born without a birth defect. We knew that God had given Cade to us for a reason, and we spent the first few months of Cade’s life educating ourselves about his condition and things we could do to make Cade's life as normal as possible. Although there were things we had to do differently, we tried very hard to treat Cade as though there was nothing different about him. Before his first corrective surgery, we proudly showed him off, took pictures of him, and sent him to daycare as though there was nothing different about him. We focused on educating everyone we came in contact with, rather than sheltering him at home.
When Cade began school, sometimes the other children would tease him. As much as it broke my heart when he was bullied, we explained that everyone gets made fun of and that we all have insecurities. We asked our family and close friends to share their own experiences and insecurities, and encouraged Cade to address his differences. When he was the star of the week in school, he would take in pictures from infancy and educate his classmates and teachers about his condition. Before each surgery, I would join him at school to talk about the surgery in front of his class. As a result, the other children became supportive and protective of Cade, rather than teasing him, once they knew more about what he was going through.
Today, at age twelve, Cade has had five reconstructive surgeries, five sets of ear tubes, and has many more surgeries to come. I admire Cade for his determination, confidence, and his caring and outgoing personality. He has learned to define his disability, not let it define him, and to use it to help others by telling his story.
From Cade:
God has made me this way for a reason, and I feel his reason was for me to help show other kids and adults that it’s ok to have a disability. It shouldn't hold you back. It has never stopped me from doing anything. Sure there are things I don't like about myself, but overall I am happy with the way I look. My goals are to continue to make people feel better about themselves and strive to become a professional baseball player. If I had message it would be to say “look at me, not my disability!” God made you this way for a reason too, you have a gift not a disability so hold your head high and go for your dreams.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Josh’s Story—Written by his mom, Krista
As a family of three, we decided to adopt a child from China. During the adoption process, we agreed to adopt a child with special health care needs, and shortly thereafter, we were matched with Josh, a little boy with cleft lip and palate. His condition was surgically repaired while he was still in China, when he was about 2 years old. He was reexamined after we brought him home, and the doctors were impressed with his repair. He shouldn’t need another procedure until he’s between 8 and 10 years old.
Josh is doing beautifully so far. At first, he needed some speech therapy to make sure he was on track, but he no longer needs these services because his skills are age appropriate. He also did wonderful at picking up his new English language. Josh is getting ready to turn 4 years old soon, and he’s becoming quite the entertainer. He loves to make people laugh and tease his older brother. We are so lucky to have him.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Avery’s Story—Written by his mom, Meghan
Avery was born at 6lbs 7oz with gastroschisis. We knew of his defect at 12 weeks into my pregnancy, after a blood test came back with concerning hormone levels. An ultrasound confirmed that he had exposed bowel. Avery’s birth defect affects one out of 2,229 babies in the US.
Prepped for the remaining 25 weeks that the condition was treatable, we met him with rosy expectations. After being wheeled away for surgery immediately following birth, his intestines were placed back inside his body. He spent 107 days in the hospital and under went multiple surgeries and procedures to attempt to get his affected bowel working. Avery spent 13 weeks fully awake and with a single central line providing his nutritional needs. After a surgery, he had some unanticipated complications. After more surgeries and procedures, it was discovered he was 100% brain dead. Surrounded by our loved ones, we released him to the angels after 107 beautiful days of life.
Fueled by the loneliness following the prognosis at 12 weeks, I began blogging to seek support from families affected by gastroschisis and to promote research and awareness. I helped found a support organization for children and families affected by gastroschisis.
Avery was the greatest joy and hope in my life. I advocate for his life as any other mother would, and to further that joy and love that he was and is in my life.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Genevieve's Story--Written by her mom, Tiffany
Genevieve is a twin, born early with gastroschisis. She spent 3 months in the neonatal intensive care unit (NICU) and needed several surgeries and countless procedures to keep her alive. Unexpectedly, she got a massive infection in her gut, which destroyed her remaining intestine. It poisoned her blood and she almost didn’t survive. Her birth defect led to problems for many organs inside of her body, and she’s needed several treatments during her life to be able to thrive on her own. Through this journey, we’ve learned that gastroschisis can range from a short stay in the NICU to a lifetime of complications. Each baby's story is different and there is no way of knowing that path until you are already on it.
Genevieve is now almost 3 years old and has continued to have a few complications due to her birth defect. She will continue to struggle with things like hydration and nutrition. And, we will always have to watch her for signs of problems. But, this little girl doesn’t let any of that bother her. She is strong and beautiful and inspiring to those who know her story.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Josh’s Story—Written by his mom, Megan
At 18 weeks pregnant, I was told that my baby had gastroschisis, a birth defect where the baby’s intestines stick outside of the baby’s body. At 34 weeks into my pregnancy, I was induced into labor, due to worrying ultrasounds. Joshua was born at 6lbs and 10 ½ oz. Because of his gastroschisis, he lost 2/3 of his small intestine, a small portion of his large intestine, and his appendix. Because of this, he was diagnosed with short-bowel syndrome. He had to have surgery a couple days after birth to connect parts of his intestine back together, and he has had multiple other surgeries since then.
Josh is now in 4th grade, and so far is enjoying it. I can't believe he's almost 10! Double digits—where has the time gone? He has flourished in school, but he has also had some difficulty. As we’d been warned, he has a weaker immune system. He seems to catch everything that comes his way. Through this journey, we’ve learned that every day is different. One day he’ll be doing so great, and the next he will have taken three steps back.
He’s such a strong, sensitive, little boy. I know he has a bright future ahead of him, and we look forward to every moment. I can only hope that reading his story can give other parents hope.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Nick
As Susan welcomed the birth of her son Nick, she thought everything seemed normal. However, as she asked, “Is my baby fine?” the initial smiles surrounding her quickly changed to whispers and concerned looks. Soon, Nick was whisked away to specialists in a large children’s hospital while Susan was left behind. Shortly afterward, she was released, leaving with a balloon that read “It’s a boy!” but she held no baby boy in her arms. Susan did not realize then that the adventure had only begun as tests soon revealed that her baby had a congenital heart defect.
After Nick had three difficult open heart surgeries, his doctors decided that he could survive only with a heart transplant. Just before his second birthday, Nick received his new heart. Although Nick is 23 years old now and doing well, he and his parents still worry about transplant rejection and the future. “I think about the pain and frustration we have been through, and my hope for other families is that we can find out what causes congenital heart defects so that we can prevent them,” added Susan.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Ryan’s Story – Written by his mom Laura:
The night after my son, Ryan, was born, I felt like something wasn’t right. He did not cry. He had a hard time feeding. He felt cold. When the pediatrician found nothing wrong and cleared him to go home, I had an uneasy feeling. But it wasn’t until that first night home, when his legs were bluish in color and his breathing was labored, that we knew for sure that something was wrong. We called the paramedics, and when we got to the hospital, the doctors recognized that something was wrong with his heart. After some more testing, the doctor came in and very bluntly told us that our beautiful son had a very grave heart condition called hypoplastic left heart syndrome. Without immediate intervention, he would die. Suddenly, the room was swirling, and I crumpled to the floor. All I could think about was how our older son might not see his little brother again.
Since that day, Ryan has had a number of surgeries, his first one at only five days old. He slowly got better, but at two years old, he took a turn for the worse, and we decided to put him on the heart transplant list. While Ryan was in the intensive care unit (ICU) getting more and more sick, we finally heard the doctor say those magic words, “We have a potential heart.” On the day of his transplant, my husband happened to get in the elevator with the man transporting the heart. All he could muster to say was “Take care of my son’s heart.”
Ryan is now eight years old and is doing awesome. He is such a blessing to our family—we cherish every day with him. It hasn’t been easy. There have been many challenges, like getting insurance to help with all the bills and getting Ryan the support he needs to reach his milestones. But I would not change a thing. I want the world for him. I want him to be able to do whatever he wants. And, he does. He wakes up every day, the happiest kid with no fear.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
William
I was born with a heart defect, tetralogy of Fallot, in 1954. My parents were told that I would not survive even a year. At that time, the option of surgery was new and very few doctors were skilled in this type of procedure. In 1966, at the age of eleven, I had corrective surgery. The medical care had advanced and I was very lucky. I was doing well until May of 1969, when we discovered that my heart rate was dangerously low: less than 30 beats per minute. So, on May 21, 1969, I got my first pacemaker. Again, because of new developments in medical care, I was lucky. Advances in pacemaker technology have continually improved my quality of life. Today, I am 58 years old and have an implanted cardiac defibrillator.
Due to the advances in medical care, today, children can get the care they need within the first few weeks of life. If I was born today with the same heart defect, the surgery would be done at 4-8 weeks of age. As the medical community learns and moves forward, people with heart defects have and will benefit as a result. Now, we live longer, healthier lives. However, our surgery is not a total cure, and, as we age, we still suffer effects of these conditions. Continued medical care and ongoing research is vitally important to each of our lives.
Thank you for supporting research in congenital heart defects.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
The child had a cleft palate which has now been repaired by the wonderful team of Operation Smile Bangladesh Singapore Friendship Mission. The team does their best to make the patients feel as comfortable as possible! A child smiling on an OR Table is not something you see very often!
Pre/Post Nurse Kristi and Sister Jane are performing a final checkup before the surgery.
Operation Smile Bangladesh Singapore Friendship Mission, Dhaka
Daniel and Jacob’s story—Written by their mom, Kristin:
I have a vivid memory of hearing the doctor say to me “Your son will have a cleft lip and palate.” Time stopped temporarily, and I felt suspended on the exam table. Cleft lip and palate? Me? My baby? As we anxiously awaited the birth of this special son, I played over the scenarios in my mind. Would he eat like other babies, would he look too very different? The wait was agony. When the baby came he looked up at me with his steel blue eyes and cherubic cheeks. Then, he nuzzled me softly, and I knew we would be alright. I would buoy him up and help him thrive, and he would do the same for me.
Three years later, it was like a bad movie stuck in replay, “Your son will be born with a cleft lip and palate.” Wait a minute, I thought, I have already done this. I already paid my medical bills; we completed the surgeries. We have to do this again? Six months later my third son was born like his older brother, with a cleft lip and palate. This baby would suffer more with a more complicated condition. But it didn’t matter, I knew how to do it now, and any difficulties we experienced were swallowed up in our family’s love. Both children are resilient and active. My boys are strong and healthy. We have endured much and are grateful and stronger for it.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Josh and Alissa’s Story—Written by their mom, Susan:
Our experience with cleft lip and palate has expanded over the years through the experiences of 2 of our 3 Chinese-born, adopted children: Emily, Alissa, and Joshua. Alissa, 11, was adopted at 18 months. She had a minor cleft palate that was easily repaired in the United States with the help of a cleft lip and palate team. She has experienced no issues since her repair. Joshua, 6, on the other hand, was adopted at age 2, and he has had multiple surgeries with the expectation of many more throughout his childhood. His first 2 surgeries to repair his lip and palate were completed in China. Since coming to the United States, Josh has had 2 more surgeries to repair his birth defect. He receives specialized care through a cleft lip and palate team. We travel over 2 hours each way to ensure that he has the best care possible. Because kids with clefts need a variety of special services, cleft teams help provide this specialized care in a coordinated manner. Even though we know there are multiple surgeries in his future, we are so pleased with the efforts of specialists and national associations in this country to provide exceptional care for children like Alissa and Josh so that they can have the best possible future.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
Medical Screening Camp to rectify Facial Deformities and Oral Cancer was Jointly Organized by;1. Department of Women & Child Welfare Department, Govt. of Karnataka, 2. Rotary Club of Madhugiri, 3. Sumukha Foundation and 4. Trinity Care Foundation. www.trinitycarefoundation.org/
You can also mail us at : support@trinitycarefoundation.org
Daily
My name is Daily, and I am currently 19 years old. I was born with spina bifida. I have had so many surgeries that I have lost count myself. I am currently in a wheelchair. I really don't consider myself any different than anyone else. I can do everything a walking person can do, just in my own way. When I was born, my mom was told that I wouldn't make it. And boy, did I prove them wrong. I just recently graduated high school, and I am getting ready to start college. I am so excited. My major is Early Childhood Education.
Learn more about birth defects:
Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.
A photo of Mohammed Ali from Ethiopia. Learn more at cure.org/curekids/ethiopia/2013/09/mohammed_ali/