Thursday, October 25, 2012

Can I Get a Doctor?

**This post was originally written on October 25, 2012**

Although babies with Down syndrome can be just as healthy as any other child, they can also have an increased risk for a wide range of medical problems.  Even though some of these problems, like congenital heart defects, increased susceptibility to infection, respiratory problems, gastrointestinal disorders and childhood leukemia can be quite serious, the good news is that medical treatments have improved substantially and most of these health problems are now treatable, and the vast majority of babies with Down syndrome grow up healthy and active

Between 30 and 45 percent of babies with Down syndrome are born with heart defects.  These defects vary from mild defects which may disappear with time, to severe defects which will require major surgery.  The most common congenital (present at birth) heart defect is Atrioventricular (AV) spetal defect, which is what Sophia had.  This occurs when the valves separating the atrium (upper chamber of the heart) from the ventricle (lower chamber of the heart) leak allowing blood to flow in the wrong direction.  This problem is quite serious but can be corrected with surgery in infancy.  We found out about Sophia's heart defect right before her first surgery when she was only 2 days old.  We spent the next 6 months monitoring her heart and trying to fatten her up for preparation for open heart surgery.  At 6 months old, December 1, 2009, Sophia got a healthy heart!  She spent 9 days in the hospital recovering from surgery and was such a trooper through the whole thing.  Sophia now has a healthy heart and shouldn't have any future limitations because of the previous defect. 

**recovering from open heart surgery**

Children with Down syndrome are also at a higher risk to have thyroid problems as well.  Hypothyroidism being the most common type of thyroid problem both among the general population and children with Down syndrome.  Because of this higher risk, it is recommended that children with Down syndrome have their thyroid checked annually.  For the first year it was recommended that Sophia have her thyroid checked twice, every 6 months.  Then after that we were told to have it checked annually, which we do. 

The gastrointestinal (GI) tract, consists of the parts of the body that take in food, extract the nutrients, and dispose of waste.  Gastrointestinal problems tend to be more common in children with Down syndrome than in the general population.  One of the more common anatomical anomalies (the structure of the organs is abnormal) is a duodenal atresia, which is the narrowing of the small intestine causing the first part of the intestine where it connects to the stomach to be completely blocked off.  Since no food can pass from the stomach into the intestines, this condition must be treated immediately by surgically removing the blocked part of the intestine.  This is what initially sent us out of Terre Haute and up to Riley Children's Hospital the day after Sophia was born.  Two days after birth, on June 8, 2009, Sophia underwent her first surgery to repair her duodenal atresia.

**Sophia had to have her stomach emptied out by a tube before and after her duodenal atresia surgery.  Before because there was no where for her stomach bile to go since there was a blockage, and for a while after while the repair healed.**

The most common functional (the organs do not work the way they should) GI disorder is esophageal motility disorders and gastro-esophogeal reflux.  Children with Down syndrome often have problems with reflux.  Reflux does not mean that the child spits up during or after a feeding.  In most cases, this simply means the child has swallowed air.  Reflux can occur because the esophagus is having trouble propelling food into the stomach or it may occur because the stomach is emptying too slowly.  We struggled with this for a very long time when Sophia was a baby.  Her stomach was very slow to empty causing us to have to feed her very small amounts of formula, at a very slow pace; practically feeding her consecutively 24 hours a day in the very beginning.  In many cases the child will out grow the problem.

Children with Down syndrome are at risk for respiratory infections.  Some respiratory infections are caused by a weak cough, which is sometimes seen in children with hypotonia (low muscle tone.)  Other causes of respiratory infection are heart problems leading to fluid in the lungs, regurgitation of food from the stomach into the lungs (aspirating), and weakened immune systems.  Because of Sophia's heart defect she had problems with fluid getting into her lungs.  She was on medication to help prevent this, but because she needed a higher dosage, she landed herself back in the hospital right before she was about to turn 2 months old.  Sleep apnea, temporary stopping of breathing during sleep, is also sometimes seen in children with Down syndrome.  Sleep apnea is often caused by the adenoids or tonsils being too large for the size of the mouth.  Symptoms of sleep apnea include restlessness, noisy breathing, and snoring.  This can be a serious problem since the baby may have reduced oxygen levels to the brain.  Sophia was sent home from the hospital at 1 month old with a sleep apnea monitor and oxygen, due to her heart defect.  After a sucessful heart surgery, a sleep study was done and she was taken off the oxygen full time and no longer needed the monitor.  She continued to have a few more sleep studies, where they monitor body functions including; brain (EEG), eye movements (EOG), muscle activity, heart rhythm (ECG), respiratory air flow and respiratory effort indicators.  We later came to the conclusion that she would most likely benefit from having her tonsils and adenoids removed, which was done on November 3, 2011.

**The dreaded sleep study.  I mean really, who can get a good nights sleep like this?!?!?**

**Recovering from having her tonsils and adenoids removed.**

Close to 70 percent of children with Down syndrome will have some type of vision problem.  These problems include farsightedness, nearsightedness, strabismus (crossed eyes), amblyopia (lazy eye), astigmatism, cataracts, and blocked tear ducts.  All of these problems can be treated if detected early.  All children, not just children with Down syndrome, should have their eyes tested.  Sophia had her vision tested twice, every 6 months, for the first year, then it was recommended to have them tested annually.  Right now Sophia is a little farsighted, but is not in need of glasses at this time.  Everything else with her eyes appear to be good. 

A higher percentage of children with Down syndrome also tend to experience some type of hearing loss.  Hearing loss can be treated with antibiotics to treat infections, eustachian tubes to remove fluid from the inner ear, or, if necessary, hearing aids.  Again, with early detection, children with Down syndrome should be able to hear normally.  Sophia failed her first newborn hearing test, but was re-tested a few months later and passed.  Sophia has had her hearing checked about every 6 months from when she was born.  Overall her hearing appears to be ok, but will be monitored annually now to make sure that no problems arise. 

It is important to understand that any of these conditions can occur in any child, although they do tend to be more common in children with Down syndrome.  When you look up medical problems + Down syndrome, it can be a little overwhelming and even frightening.  You just have to remember to take one day at a time though.  All children get sick and no one is exempt from health problems.  As much stuff as we've went through with Sophia, it was all "fixable."  It was a hard road to travel, I'm not going to lie, but I would do anything to make my children better and the bottom line is, all of the rocky roads that we've had to travel down, have only made us stronger in the end.                     


  1. Bless her heart:) It's easy to forget all of the medical "stuff" she's soldiered through...I would be a whiny, crying, complaining mess if I had to endure a fraction of the procedures Soph has had to endure. And yet, there she is, always smiling, never cries, and just makes it all look painless and no big deal. Such a trooper:) <3 her

    1. It is hard to believe all the stuff she's been through, it seems so long ago! She is such a strong and brave little girl :). My hero :)

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