Well, I already knew that our family has a good heart, but now it's proven in Maggie's case. On Friday we went to see the pediatric cardiologist, and she had a totally normal EKG and echo. And, the doc was wonderful and sat down and really explained SIDS to us.
Turns out, it is VERY rare for a very young infant to die (assuming no known birth issues). He explained there are really only 4 ways an infant would pass away - a structural heart issue, a massive infection, a brain issue, and a different cardiac issue. The first 2 were ruled out in Nora's case already. But after listening to our story, he feels it's the 4th reason. All babies have a blood vessel that bypasses the lungs in-utero. When the baby is born, that blood vessel switches off, and in the first few days of life, the hole for it should close up. If it doesn't, there is a chance that the babies blood would bypass the lungs, and then non-oxygenated blood would be circulating around her body, which obviously is a very bad thing. He feels that this is what happened to Nora - even thought he can't really prove it.
The thing about this explanation is that is makes me feel better in a few ways. First - there is nothing Aaron nor I could have done to prevent it. It isn't like if we poked her and 'reminded' her to breathe that she would still be with us today. He assured us that even if we were holding her when it happened, we couldn't have done anything. Nor is it something that they could have seen in the many ultrasounds I had prior to her birth - it's a vessel that supposed to be there. And, there really isn't a way to screen for it after birth. He did talk about talking a blood oxygen reading while in the hospital (they do that in Sweden now) - if for whatever reason the blood is still passing thought that vessel the babies blood oxygen would be low sometimes... but it could also happen just one time with fatal consequences.
And - him taking the time to actually explain SIDS and the main causes of it has made me feel a lot better about Maggie and her health. We know her heart is perfect thanks to this visit, and now I know that my theory of making sure she is breathing all night is a little crazy.
Doesn't answer the way question - like WHY did this happen to us - but it does soothe a bit of our worries on if we could have done something and the stress of the possibility of it happening again.
Off to work on painting the blackboard wall - WOOT!
14 comments:
If only we could answer the why question, right? The only thing I have learned is that life is never fair and rarely makes sense.
And no matter what, this was NOT your fault.
I'm happy for the good report on Maggie!!
I'm also happy the doctor took the time to sit and talk to you. I hope it will help you.
(Thank goodness I came in to comment, now I can get my penis enlarged!!)
It's nice to know that Maggie's heart is perfect. And I am glad you got a doctor that made some sense and took the time to explain.
So great that ya'll had a doctor walk you through. And wonderful news about Maggie's heart. xo
Oh deary me. Somebody has spammed this post of all posts with a p.enis enlargement ad.
I'll clearly have to click on the link and do something about my deficient p.enis now.
Anyway, joking aside, I am glad you have some answeres, even if the answer is kind of no answer in a way and it makes the loss no easier.
g
You might want to google Cora's Story....it is about a 5 day old baby who sadly passed away from exactly what you are describing...while breastfeeding in her mother's arms. The pulse ox test should be done routinely with all newborns to rule out any issues. My son had a hole in his heart that did not close till afer he was 12 months and he was always turning blue. He is 4-1/2 now and fine thank god...but I was always freaking out and never slept much as I as always checking on him. Sorry for your loss and best wishes to your beautiful family.
It is disgusting that some idiot put an innaproprate ad on your family blog....people are such A-holes. I just googled "Cora's story"....what a sad and mowing blog...she was born a day or 2 apart from your twins and passed away a day or 2 apart from Nora....her name was similar too! Her mom is trying to raise awareness so that other babies can be screened to avoid such devastaing outcomes. Glad to hear Maggie is ok...and Hulk is just as healthy looking as can be!!! What cuties!!!
It's absolutely NOTHING you did. There's absolutely no way you could have known. I am here for you today, and always. For the most part, we don't even know why these babies have these congenital heart defects. But, we do know they are they MOST COMMON birth defect. I am fighting so hard now not just for Cora, but for little Nora as well. We will get these babies screened. We will fight to bring more research funding to figure this out. I'm speechless this morning. So much love and light.
I'm glad you got some peace after the visit. I know there's no way to answer all the WHYS but at least you know for sure that it was out of your hands and, of course, absolutely not your fault in any way, shape, or form.
I am so happy that a doctor sat down with you guys and gave you some peace of mind about Maggie.
And with regards to the why? Jen said it better than I ever could.
Thinking of you guys often.
xxx
I'm so glad that you got some answers and a bit more peace.
SO glad Maggie heart is all good.
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It's nice to have some anwsers, to know that there was nothing you could do, and that Maggie is okay must be a huge relief.
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