Wednesday, October 3, 2012

Dealing with Medical Worries- 31 for 21

Some of my first concerns after Cora was born were the myriad of common medical conditions for people with Down syndrome.  I read about all the things that are common in the Ds population: heart problems, gastrointestinal problems, orthopedic problems, upper respiratory infections, hearing loss, sleep apnea, thyroid problems, eye problems, leukemia, and skin conditions.  There are others too, and all together the list can be so daunting.  I mean, what isn't on the list?  And of course, the heart seems like the biggest scariest one of all.

When Cora was born at home and my midwife told me that she likely had Down syndrome, she also told me that her heart sounded good.  Of course, she told me that sometimes you can't hear problems right away and that Cora would need to be evaluated.  I was so relieved then.  She was born on a Thursday and we planned to get her in for a full examination and referral to specialists on the following Monday.

But then Friday morning brought us a baby who began to repeatedly turn blue.  An ER run quickly morphed into a NICU stay, where a pediatric cardiologist came in the late afternoon (thank goodness we didn't have to wait until Monday morning!) and told us about her heart defect.  After explaining what it entailed for a moment I thought I heard him say that it wasn't repairable.  But thankfully I was wrong.  Yes, the first three months of Cora's life were pure torture.  We waited for her already present heart failure to get worse and watched her deteriorate before our eyes until her heart surgery was done.  I had never experienced fear like that.

But you know what?  Three months into our life with Cora her heart was fixed.  She began a smooth recovery and her development finally started to take off.   

And that fear was lifted away like magic.

I've heard a lot of parents rattle off their new little one with Down syndrome's medical stats, often exclaiming at the end, "But at least he doesn't have a heart defect."  I can totally understand that feeling.

But for us, Cora having a heart defect was certainly not the worst thing that could happen.  Yes it made our lives pretty miserable for a few months.  But that part of her life is quickly shrinking into our past, and it encompasses such a short part of her history already.  And it definitely worked to make us stronger parents and to put it all into perspective. The fear of losing her forced my love for her front and center right away.  I didn't have time to slowly adjust to being a parent or to her diagnosis, or to gradually bond with her.  I felt like I had to fight for her all at once.  The mommy in me was born on January 13, 2011 and I came out figuratively kicking and screaming in a way my little baby with heart failure wasn't able to do.  Thank goodness we were able to do that for her.

So, I guess... all that rambling is to say that Cora's heart defect and her surgery, that big nightmare of the bad things that can happen, turned out perfectly alright for us

In fact, most of the heart defects in children with Down syndrome are very treatable now.  Some require surgery and some do not.  Most of the little ones that I know in person or follow in our  blogging world have had wonderful recoveries.  Of course, there are always a few that end up as true worst case scenarios, but those are few and far between.  Yes, the fear is there for a reason, but the chances are very very strong that your baby with Down syndrome's heart defect will not ruin their life.

Cora has had a handful of other medical concerns that may seem less daunting than an enormous heart defect.  Of course, when it's your baby and your life any medical issue seems daunting. But no babies have all of the conditions on that list of possibilities.

So far, in addition to open heart surgery, Cora has had a tonsillectomy and adenoidectomy to treat apnea and considerable airway blockage. She had complications and respiratory distress after that surgery, but it was ultimately successful and now her apnea is mild and doesn't require treatment.  She has mild nystagmus that is improving as she gets older and doesn't require treatment at this time.  She definitely has low tone and is pretty weak in developing gross motor skills.  She's actually getting fit for foot and ankle braces this week.  She has had excema, constipation and a sensitive system.  Her feeding is a little bit behind, complicated by a severe issue with food intolerance called FPIES (which is completely unrelated to Down syndrome) and delayed dentition, and a serious case of being majorly stubborn.

And there are a lot of things on that long list of possible conditions that she does not have.

Of course, she is monitored regularly.  She has a pediatrician, a cardiologist, an audiologist, an opthalmologist, an ENT, a sleep neurologist, a gasteroenterologist, a geneticist, a couple of chiropractors, a naturopath, and a slew of therapists from speech, to occupational and physical therapists.  She doesn't see them all on a regular schedule, though.  But even when she's healthy there are always check-ups.  It definitely takes a good team and a great pediatrician to manage all her care.

But all in all, it is manageable.  She is a healthy little girl who has seldom been sick.  We manage her appointments the best way we can.  Sometimes it seems difficult, but at other times it doesn't feel like a very prominent part of our lives.  I imagine that it is a more challenging experience than some parents probably expect to deal with, but there really is no way to know whether a child will end up with medical problems.  Even the best prenatal tests can't tell you everything your child will have to deal with.

After a prenatal test diagnoses Down syndrome, I am told that many doctors focus on all the possible medical conditions that can result.  And these possibilities can play an enormous role in the choice that an expectant parent makes about whether to continue the pregnancy.

But these tests can't tell you everything.  They can't tell you how hard you will fight for the life of your child.  They can't tell you how you will feel if you feel that your baby's life is in danger and how very precious that life will become to you.  They can't show you all the joys you will experience or the ways your child will change your life for the better, even if there are medical obstacles to face.

The list is really just a list of fears.  Each child's story will be different.  But each story has the chance to be a good, worthwhile and valued story, even if there are a few obstacles in the way.


  1. I remember reading the list of medical conditions that Hailey "could" have the day we received her possible diagnosis. That alone was enough to make me hyperventilate. After her heart defect diagnosis, everything paled in comparison. Overall, we have been very lucky. Hailey is very healthy, too! People have an obscure vision as to what is considered healthy. DS is not "unhealthy"!

  2. You said all of this *perfectly.* The heart issue was a walk in the park compared to some of the issues Samantha or Cora could have had. And because of the *particular* heart defect she and Cora had, the surgery was very early on, and we were able to quickly put it behind us and move on without any future complications from it. Soooo thankful for that. I'm so glad I did not have a prenatal diagnosis - reading all of the things that *could* have happened or that she *could* have had made me so anxious after-the-fact, after knowing already what she *didn't* have, I can't imagine how stressed out I'd have been while I was pregnant.

  3. For us I think the heart defect made our acceptance of our DS diagnosis at birth easier to deal with in a lot of ways. The minute she was born I was in unimaginable love with her. Then we had to fight for her life as you did and everything was secondary to that. After that experience I didn't take much for granted and barely even flinched at ENT surgeries or medical procedures. Our girls are fighters that is for sure!

  4. I remember the day the Doctor read me that enormous list of all the possible things that Russell could be dealing with...It was completely overwhelming. I don't even know if they should read that list to a new Mom, like you said each child's story is different, so why terrify a new Mom with a huge list that may not even apply to her child!


Thank you for sharing your thoughts with me!