Monday, August 01, 2011

Q & A About My Experiences With Down Syndrome

I started this post as a draft quite a while ago, and am finally sitting down to finish it.  I wanted to get down in writing my thoughts and feelings on questions I get asked a lot.  And I wanted to do it while things were still "fresh", as I suppose it's possible my answers may change over time.

I have been asked a lot of questions since learning of Braxton's diagnosis of Down syndrome.  Some questions I get asked a lot.  And some questions I ask myself.  So here are my answers to the questions I can remember.

Did you know your baby was going to have Down Syndrome?

I don't know why, but this is a really popular question.  In fact I find myself wondering it and asking the same thing when I speak with other parents.  The answer is no, we did not know that Braxton would be born with Down syndrome.  In fact, we didn't even suspect anything until he was 3 days old and the NICU doctor told us he suspected it.  Even then, we were doubtful.

During the pregnancy we did the first round of genetic testing (ultrasound and blood work at around 14 weeks) and did get back some numbers that were slightly concerning...1 in 86 chance of having Down syndrome.  But we were told that the numbers weren't alarming until they were higher than 1 in 50.  Plus the test has a 30% inaccuracy rate.  So we prayed about it, had peace, decided that we weren't worried, and decided not to get the follow-up test.

Also, I shared with a friend that early in the pregnancy I couldn't "shake the feeling" of the baby having Down syndrome.  But I chalked it up to typical expectant-mother-worry.

All that to say, no, we didn't know ahead of time about Braxton having Down syndrome.  But in hind sight, perhaps we were suspicious.

Do you wish you had known ahead of time?

A lot of people talk about "wanting to know" before their baby is born, so they can prepare themselves.  I can see their point and I think this is just a personal preference.  I am actually glad that we didn't know, for a lot of reasons.  First of all, since we couldn't immediately see that Braxton had Down syndrome, we went home and settled in with our newborn.  We had two days at home to just love on and bond with our new baby.  I look back on that time with such fondness.  In some ways it was the calm before the storm.  And for those two days, my baby was perfectly "healthy" and I didn't have to worry about anything.  I will probably never completely have that again with Braxton, so it is precious to me.

Another reason I am glad that we didn't know ahead of time is that I was able to go ahead with giving birth at a birthing center (well, sort of).  Had we known about Down syndrome, I imagine there would have been pressure to deliver at a hospital.  Plus there is a good chance Braxton would have ended up in the NICU without going home first.  Which goes back to my first point, that I was so glad we had some time at home to just be a family.

I also think that if I had known ahead of time, the pregnancy would have been a lot more stressful.

Would you have done anything different if you had known?

Like I said above, there is a good chance the birth would have gone differently had we known ahead of time.  But I think what people really mean is, "would you have terminated the pregnancy?".  I have actually asked myself this question.  I have always said that I would never terminate a pregnancy due to a baby having a disability.  But now the question became a lot less hypothetical.

I can honestly say, NO WAY would I have terminated the pregnancy.  I would give birth to Braxton a thousand times over.

When will Braxton meet his milestones?

I find this question kind of funny, because I have never met two babies who have developed on the same "schedule".  My own kids, for example, have started walking at anywhere from 12 months, to 16 months old.  A friend's baby started teething at less than three months old, while many others have been toothless at their first birthday.

Braxton will meet all his developmental milestones, just like any other child.  Yes, he will likely be a little bit slower at doing so, but he will get there eventually.

How are your kids handling things?

My kids love their baby brother.  Period.

With the exception of Biniam, who is 16, the little kids have no idea there is anything "wrong" with Braxton.  The night before our playdate last week, I told the kids what we were going to be doing.  I said, "We are going to a playgroup for kids who have Down syndrome, since Braxton has it".  To which Emma quickly replied, "I didn't know that!".  Not that she even knows what Down syndrome is (aside from what we told the kids in the beginning).  To Emma, all people look different, and I think she has yet to notice anything unusual with people who have Down syndrome.  I guess she was just surprised to hear that Braxton has any sort of "label".

The kids of course see that Braxton gets extra attention from therapists and nurses and frequent doctor appointments.  But I think they just figure that is part of the territory of having a new baby brother.  And they don't seem to be jealous or threatened by any of it.

The only real negative emotion I've seen so far, is that Emma still gets worried every time Braxton has a doctor appointment, that he will have to go back to the hospital.  I try to reassure her by saying, "no, I don't think he will have to go to the hospital, but if he does it's because we want him to get the best care possible".


I am happy to answer any other questions, as I think it is good for me to process through things, and it might be helpful or perhaps just interesting for others to read my answers.  So feel free to ask away, either in a comment here, or by emailing me at (shana white 78 @ hotmail dot com) - no spaces, of course.

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