![]() Ear, nose, and throat (ENT) problems are common in individuals with Down syndrome. It is important for primary care physicians and caregivers to be aware of these. Prognosis for People with Down Syndrome. Although the prognosis (expected outcome) for children who have Down syndrome depends on the severity of medical problems and. Parent Stories. Reflections from parents of children with Down syndrome who have a heart defect or who have experienced heart surgery: From Nancy, describing her. Down Syndrome - Healthy Kids Center: Information on Children's Health. Down syndrome (DS) is a condition due to a. The chromosome abnormality leads to. In 1. 95. 9, the late French physician Jerome. Lejeune and coworkers reported finding an extra chromosome in each of. DS. The extra chromosome in all of the children. Since. having three instead of the normal two chromosomes of a specific type. DS. A DS baby has certain characteristic. DS to be made at birth. For. example, approximately half of DS children are born with a. DS also carries an increased risk of acute. The intellectual handicaps in DS are of great. These handicaps may not be immediately. Very few adults with Down. It was once thought that nearly all adults with Down. Alzheimer's disease (dementia) so that on top of their. Down syndrome were slated for. However, it now appears that a much lower. Down's adults develop dementia. The. majority of adults with Down syndrome may thus be spared this fate. Heart Moms . Although I believe our experience to be rather common, please remember that symptoms, complications, and recovery times may vary. Please make sure that you address any concerns with your nurse or doctor rather than relying on my account. This information was of course very shocking and scary, and we feared for our daughter’s life despite calm assurances from our cardiologist that this surgery carried with it a stellar success rate. Despite the good prognosis, there is just something about those words, “heart defect,” “open heart surgery,” and “hole in the heart.” It seems overwhelming. After our initial shock wore off, we were able to do research, and the more we learned the better we felt. ![]() Although AVSDs do not close on their own, we learned that Children’s Hospital of Philadelphia (CHOP) is the top children’s hospital in the country, that the cardio- thoracic surgeons perform daily heart surgeries, and that they perform AVSD repairs twice a week. Our pre- natal panic was quickly turning into relief that we were lucky enough to have CHOP in our backyard. In addition, I was able to get in touch with other parents whose children had AVSD repairs on the on- line Down syndrome support boards. Most parents said their children did amazingly well after the surgery. During my pregnancy, we also had time to switch our insurance company (which saved us thousands of dollars), tour the cardiac floor, and meet with the cardiac lactation consultant at CHOP to develop a plan for breastfeeding. Additionally, our cardiologist was able to monitor the baby’s heart with several echocardiograms. If no complications developed, we would be able to deliver the baby at our local hospital with our regular obstetrician. ![]() ![]() Presurgical Experience. Our baby, Gabriella Louise, was born on March 1, 2. My cardiologist had recommended the baby be on breast- milk long- term, and I had nursed three children previously, so I was determined to nurse Gabriella. Unfortunately, she was not interested. Around- the- clock pumping was difficult, but I continued it for many weeks. I stopped trying to breastfeed when she was only 9 days old because she would cry when I tried. Instead, we gave her breast milk in a bottle, fortified directly with high- calorie powdered formula at a ratio my cardiologist recommended. It took a very long time to feed Gabriella a bottle, and she rarely ate the full three ounces. I eventually stopped pumping at night, and eventually stopped feeding her in the middle of the night due to sheer exhaustion. I worried about her total calories, but taking an hour at 2: 0. A. M. At two weeks of age, she was consuming an average of 1. ![]() Down syndrome Definition. Down syndrome is the most common cause of mental retardation and malformation in a newborn. A genetic disorder, it occurs because of the. How Down Syndrome Affects Kids. Kids with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears. Down Syndrome Was Not Discovered By Dr. Down syndrome (DS) is a condition due to a chromosome abnormality. The chromosome abnormality leads to impairment of. Go To; Chatter Camp. Sharpen your skills at DSRF summer school! Go To; Music in Motion. Ready to Rock? Go To; Benefits of Bocce. This steadily increased to over 1. Her original birth weight of 5 pounds, 6 ounces increased to 6 pounds, 1 ounce (2 weeks), 7 pounds, 6 ounces (6 weeks), 8 pounds, 9 ounces (1. I was actually very happy with this weight gain considering that we expected her to do much more poorly. When Gabriella was 8 weeks old, things changed dramatically. She started sucking on my neck, so I just put her to my breast. I couldn’t believe it. I was so excited – I told everyone. ![]() I thought it was a “one time deal,” but she did it the next day, then the next, then twice a day, then more. Just after turning three months old, she drank her last bottle. We had gone to a wedding, and while we were gone she gave my mom a really hard time about drinking her bottles. I felt like she was already exceeding expectations, even at 2 months of age, like she could do anything. I was just so proud. My cardiologist, though impressed, did ask me to continue to try to give her a bottle, so that we could get some extra calories into her, and so that she would be used to a bottle for her hospital visit. I really did try, but by then Gabriella was accepting no substitutes. After this switch to breastfeeding, a short bout with bronchitis, and the discovery that she had gone from HYPOthyroid to HYPERthyroid, Gabriella’s weight gain tapered off. By the time of her surgery at 5 months of age, she weighed only 9 1/2 pounds. At that age, she was sleeping through the night in a very deep sleep, and staying up most of the day except for cat naps (what happened to the “sleep all day” baby they promised me?). ![]() She would nurse well, but not once she “passed out” for the night. She was very active, meeting most of the usual developmental milestones, including rolling over both ways by 4 . She was “baby talking,” smiling, laughing, and fascinated by strangers. Following our cardiologist’s orders, we’d been pretty much home since her birth, venturing out with her only to medical appointments. We had thought Gabriella would have more symptoms, like excessive sleeping, sweating while eating, labored breathing, turning blue, weight loss, lots of illnesses. Except for trouble gaining weight, she remained asymptomatic. As the time for surgery drew closer, I was so nervous that she would get sick and we’d lose our surgery date. Thankfully, she stayed healthy and we were on target for surgery. Having done a lot of research, I wasn’t too nervous, but my nonchalance was a bit ruffled when they actually came to take her. My husband and I wanted to grab her and run! The surgery was fairly quick, lasting only a little over two hours, with additional time for prep and anesthesia. We were fine waiting, but the first time seeing her was a bit unsettling. ![]() I had expected tubes, but there were so many! They came out over time, one by one, and she was “free” enough to breastfeed that night around 1. Amazing isn’t it? Of course, most of the doctors and nurses said I could not nurse her because they wanted to see how well she was eating by seeing the ounces, but I have found out with medical professionals that if you don’t like an answer you just ask the next person on duty. So the intensivist (my new word) who was on duty at 1. I don’t see why not – the bed is at the height of your breast, so roll her on her side and try it.” And it worked! ![]() The next day, so she eating like a champ, and more tubes were being removed. She was still on a little morphine, and slept a lot. At this point, she was in the CICU, with four beds to a three- walled room (called a pod) open to the nurse’s station. Most of the babies were newborns, and I didn’t meet any parents who said their kids had Down syndrome. She actually looked big in comparison to the other babies. At first, she had a nurse all to herself, but as time passed, there were two patients to a nurse. There were medical people constantly on hand. By the wee hours of Wednesday morning, Gabriella wanted to nurse at 4: 0. A. M. Pain management was strictly regular Tylenol at that point. By late Wednesday morning, less than 4. Here there were visits from a nurse, but really I was her caregiver again. She was happy, laughing, baby- talking, constantly getting herself mixed up in all of her monitor wires. We had some visitors, first three friends of mine from high school, and then my husband and the other kids. They had “sand art” for the kids, toys, and things to explore, so the kids probably wanted Gabriella to have an operation every week. That night, I slept on a couch next to her bed, which I very much preferred to the CICU arrangements. By the next morning on Thursday, we had the word – she was to be released that day. We left at 1: 0. 0, a full three days since surgery. Yes, three days after invasive open heart surgery, we were leaving with a happy, energetic, adorable baby. I even asked the nurse if she was a “miracle baby.” The nurse calmly said, “No. A lot of babies leave after three days.” As people said, “She’s so cute,” in the elevators, I wanted to shout, “Open Heart Surgery – three days ago!” but I didn’t. I just smiled. It’s been ten days since surgery, and she had her stitches taken out yesterday. The incision itself has no stitches – they used “subcutaneous” stitches, so it looks like a razor- thin line, not like the Frankenstein criss- cross we all imagine. The stitches removed were where the chest- tube came out, just below the incision, and on her right wrist where the artery line ran. She has grown and gained so much weight in such a short period of time, and her appetite since the surgery has been tremendous. I keep thinking of my fear when we heard the prenatal diagnosis of a heart defect. I worried so much! Talking to “heart moms” on the Down syndrome support boards helped to calm my worries so much, and I was very calm going in to the surgery, but I still did not expect it to be so very “pleasantly anticlimactic.” Anyone who is worried about their child’s diagnosis of AVSD (sometimes called complete AV Canal defect) should be aware that the fear I had after hearing that news was grossly out of proportion to the reality. Still, I am glad it is over and I can enjoy my healthy baby who at the rate she’s now eating will be huge by Christmas! From Melissa, talking about her daughter’s postnatally diagnosed AVSD/CAVC, her presurgical experience, surgery when Rowenna was 3 months old, and working through an oral aversion after surgery: We learned about Rowenna’s heart condition 3. She had a Complete Atrialventricular Canal (also known as a CAVC or AVSD). We spent 2 weeks in the NICU while doctors monitored Rowenna’s heart. It is so hard to think about now – we were waiting for her to go into heart failure. Looking at my tiny bundle in her isolette and knowing her heart was working too hard was very difficult. In another way, though, it helped me to work with the Down syndrome diagnosis. There was definitely a feeling of “Well, who cares about this Down syndrome thing? My baby needs heart surgery.” While in the NICU we also worked with Rowenna on eating. We tried to get her to nurse, but she would get so tired at her feedings that we made the extremely difficult decision to switch to a bottle. At the time, it felt like one more thing being taken away from me, but I know now it was a good decision for my daughter. When we left the NICU, she was taking some milk by mouth and some through an NG tube.
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