Monday, October 24, 2011


Approximately 40% of children with Down syndrome have congenital heart defects.  Some of the heart defects require surgery, while others only require careful monitoring.  Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions.  However, with appropriate medical care, most children and adults with Down syndrome can lead healthy lives.

The list of course goes on and on about health issues that are POSSIBLE in children and adults with Down syndrome, but these health issues are possible in any child or adult, regardless if they have an extra chromosome or not.  What I can tell you in this post is my experience so far.  Sophia was born with a gastrointesinal condition called a duodenal atresia.  She had a blockage where her stomach connected with her intestines.  So in order for things to pass through her stomach and out of her body, she had to have that blockage bipassed, which is exactly what happened, at 2 days old.  Was it scary having to hand my baby over for surgery?  HELL YES!  But I was confident in our medical team and as scary as this was for me, it was a pretty common procedure, in our case at least.  We also found out that Sophia had a congential heart defect at this time as well, that would need surgery to repair.  Sophia had an AV Canal repair, which again is very common in children with Down syndrome, but scary as a mother.  This was Sophia's third surgery, her second was having her feeding tube placed, and I was in knots prior to her heart surgery.  I  feared the worse but prayed for the best.  Handing her over to her heart surgeon was very difficult.  With any procedure, there are so many things that can go wrong, but usually don't.  But when you are the parent of a child going into surgery, all you can think about is all of the things that could go wrong.  Again, I was very confident in her medical team, and simply had to put my baby girl in God's hands and know that He was going to do what was best for her, and He did.  He brought her back into our arms! 

Sophia has also had some pulmonary issues, like sleep apnea, and had to be on monitors when she was younger and oxygen because of her heart defect.  She has also had issues with feeding, which we work on daily and are positive that she will come around to a love of food, just in her own time!  We are also currently approaching Sophia's fourth surgery this November.  She will be having her tonsils and adenoids removed, which we hope will improve her quality of sleep and air flow. 

Thinking back over Sophia's past and present health issues, can definitely seem daunting to a lot of people.  I mean to this day, if I had to go through this stuff with Jayden tomorrow, I would be a complete basket case!  Jayden has NEVER spent a day in the hospital, besides the day she was born.  I wouldn't know how to handle her being on the other side of the healthy chart.  And even with Sophia, it's still hard.  I hate to think about her going through another surgery, no matter how routine it is.  But this has been "normal" to us when it comes to Sophia.  She has always been a frequent flyer at Riley Hospital for Children.  She has had surgery to both help her thrive and grow and to save her life.  She has been to specialists and our pediatrician more times than I can count.  Do I worry about Sophia's health more than I worry about Jayden's health?  Yes and no.  Absolutely I worry about the health of both of my girls.  I know that in an instant everything can change and Jayden could go from being a healthy 5 year old to the complete opposite.  And as Sophia is growing up and getting out of that baby stage, her overall health is very good now.  But with Sophia, there are more statistics that say she is more likely to have this problem or that problem, so I worry more about her in that regard.  Throughout these past two years though, I have realized that all I can do is take one day at a time and cherish every thing in that one day.  I can't worry about tomorrow or the distant future, because I can't change what is meant to be.  But I can make the most of what I have, right here, right now.  And that is two very beautiful, healthy little girls that are so full of life and love and happiness!

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