Sunday, March 27, 2011

Babies with Down Syndrome: Health Issues

When a new parent has a baby they probably have prepared for the experience by purchasing a baby book that talks about general baby care, common childhood illnesses, first aid.  What is not included in the baby book is a list of serious medical conditions and what the chances are that baby will have them.  It's a good thing too, or we might all parent with a lot more anxiety.

Our brand new to the world Charlie.

When a baby is born with Down Syndrome, however, it is important that parents are aware of the medical issues that commonly affect babies with Down Syndrome.  So, we are given sheets by our pediatricians that explain each medical condition of which we need to look out for, the symptoms, the tests or treatments, and also, the percent chance that our child could have the condition.  Then we Google it.  We read the books.  We get anxious and we wonder if we can do this.  So, what is it like?

Medical issues that may affect babies and children with Down Syndrome are: Heart Defects, Gastrointestinal issues, Respiratory problems, Vision issues, Hearing impairment/issues, Thyroid problems, Orthopedic problems, dental problems, Leukemia, Weight issues, Seizures.  Wow.  That is a laundry list, isn't it?  Some of these, like heart defects (45%) and thyroid issues (13 to 54%) are more likely, while others, like leukemia (1%) and seizures (6-8%) are less common.  These figures are from the popular book Babies with Down Syndrome: A New Parent's Guide, which I recommend for a comprehensive list and information.

Our newborn baby Charlie, before we knew he had Down Syndrome.  Look how big his belly is!  He still has a "Budda Belly" as we call it.  It is not fat, it is due to low muscle tone.  This means his muscles are very loose when not flexed so they don't hold his tummy in very well.  Some babies with Down Syndrome may have medical issues involving their digestive systems that could cause their bellies to be distended like this, so it is very important to have a distended belly checked into.

For Ray and I, knowing each potential medical issue and having a rudimentary understanding of the symptom sets, lead to some anxiety in Charlie's baby years.  There were more than a couple times where I began to work myself up, convincing myself that a set of symptoms was leading to something far more serious than the simple cold that it was.  Most of the time, my fears were unfounded.

Of course, we did deal with some of these medical issues:

Charlie deals with respiratory issues.  "Baby's first cold" at 3 months for Charlie turned into a serious bout of Bronchiolitis that earned him a life flight to UCSF medical center and a week in the PICU.  His case was serious because he would stop breathing every time he cried.  It was believed this was due to his having "floppy airways" (technically called trachea malacia), that, and a partially collapsed lung.  He healed beautifully in the end. 

Charlie in the PICU at UCSF Medical Center.

The bronchiolitis was our most serious and scary respiratory illness experience by far.  Charlie does tend to have asthma when he is ill, but as he grows the asthma is not as big of a deal.  When he was a baby it meant giving him nebulizer treatments at home, and the occasional trip to the ER for more powerful drugs.

Charlie had reflux (think "excessive spit-up") as a baby and toddler.  I think of all the medical issues that can come along with Down Syndrome, this one was the biggest deal for us.  The acid reflux wore away the lining of Charlie's esophagus lending to poor sleep, and a long delay in him learning to eat due to pain.  After we began treatment with medication for the acid reflux at age 15 months, he immediately began to sleep through the night, and after 6 weeks for his esophagus to heal he began to eat.  Reflux seems quite common in Down Syndrome from my experience as a parent getting to know other parents.

One of our first attempts to feed Charlie.  He used to take a bite or two, and then cry and cry.  We finally began treatment for reflux at 15 months, and after the erosion in his esophagus healed he began to enjoy food very much.

Finally, Charlie had hearing issues.  Moderate sensorineural hearing loss, which is less common in Down Syndrome than a conductive hearing loss that is due to fluid in the ears.  Charlie no longer has hearing loss.  And, in fact, despite having tiny little ear canals as is common in children with Down Syndrome, Charlie has never had an ear infection.  Actually, Charlie has only had one round of antibiotics in his 5 years of life.  Not too many "typical" children can claim that!  Pretty healthy boy we have here.

This picture shows baby Charlie wearing his hearing aids.  He had hearing aids from age 5 moths to 15 moths when we discovered during a routine hearing test that he had gained normal hearing.

So, Syndrome refers to a group or collection of symptoms that when they occur together make up a condition, like Down Syndrome.  Any child can be hearing impaired or have almond shaped eyes, but when several symptoms or conditions common to Down Syndrome occur at once, it sort of tips a doctor off that Down Syndrome may be the cause.  Charlie neither has or is doomed to have all the different medical issues related to Down Syndrome, and some children will have more issues and some may be perfectly healthy.

A child who has more medical conditions is not "more affected" by Down Syndrome.  Down Syndrome is something that you either have or don't have by the presence of a third 21st chromosome, and it is expressed differently in every person.  A person with Down Syndrome who has many medical conditions will not necessarily be a person with more cognitive delay, and vise versa.  This is the same for the physical features.  A person who has Down Syndrome but does not "look like it" will not be less affected cognitively or medically.

It is just sort of a mixed bag.

So much more that a set of symptoms.  Every little extra that comes with Charlie's care is worth it to me.

So, what was it like?  First, Charlie was our first child.   We didn't really have any point of reference for how things may be different.  Second, Charlie is so much more than a set of symptoms or complications, so we did all that we needed to do for him medically with gladness.  We naturally wanted the best possible health for our child, and it seemed no chore to pursue that.  I think I was a lot more vigilant about Charlie's health than I have been with our other babies.  I was very organized out of necessity--we had a lot of check-ups and appointments.  Charlie is actually a very healthy little boy, and once we got past the baby years, it seemed life really settled down medically as we have a sense of what is and is not going to be an issue for him. 

As always, I welcome questions and comments.  I realize the medical side of Down Syndrome can sound intimidating, and I am willing to help answer questions about what it is like to care for a baby with extra needs.  Also, please check out the links in the Down Syndrome Resources Tab above, especially Forum where you can search for other parent's posts about certain concerns and topics, and ask questions from parents who have been in your shoes.  There is no reason to be on this journey alone.  Be encouraged!

**I just wanted to share that this post was written with the company of one very affectionate five year old boy sitting upon my lap.  A five year old boy who has been trying to convince me to put his favorite computer game on this entire time.  My five year old Charlie, Down Syndrome and all, who is so clever.  Who plays computer games.  Who chats with me while I blog.


Andria said...

Thank you so much for this blog. I had WIlliam Joseph Monahan on 13 June 2011. He was one month early. After two weeks in the NICU he was sent home. He has a heart defect and awaiting surgery. Other then that he is doing swimmingly. We wont know when he will need surgery- Sometime in the first year of life.. who really knows though. Anyway- I found your blog incredibly comforting. William is my first child as well! AT 27 I never would have expected it. But like you, Sean (dad) and I have no basis of compairison. Its sometimes hard to believe there is anything different about him at all. He brings me nothing but love and he is the most cuddly baby ever (muscle tone low who cares Ill take the cuddle!) Anyway, I just wanted to say thank you.

Jon said...


My 3-week old daughter is under observation for DS. She has some symptoms but the doctors aren't really sure. We are still thinking if we would want to take the genetic study to confirm if she really has T21. Your blogs really helps us understand and deal with the situation. Thanks so much!

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