...how the journey to mend our son's broken heart changed our family forever...
Sunday, November 15, 2009
A little more clarity
Hi everyone – we had a consultation at Children’s Hospital Friday and we wanted to update you all. After an hour and a half of scanning, they still couldn’t get a really good picture of the heart, but they have enough of an idea to go forward.
1. This baby’s heart is bizarre (the doctor’s words not mine)! I asked him if he had ever seen a heart like this before and I believe his exact words were “you know, I’ve been doing this a long time and seen a lot of characteristics of other hearts that match your baby’s, but no, I have never seen a heart like this.” At least we know why they’ve been having such a hard time giving us a diagnosis!
2. The baby only has one working ventricle – the right ventricle. So, the baby’s official diagnosis is HLHS (Hypoplastic Left Heart Syndrome). HLHS in and of itself is incompatible with life, but they now have a 3 staged surgery to “replumb” the heart so that the body can work on only one ventricle. The survival statistics aren’t fantastic, but they’re certainly MUCH higher than they were even 5 or 10 years ago (they’ve only been doing these surgeries for 20 years or so). They can’t actually grow a second ventricle (only God can do that!), but they make what baby has usable. (HLHS was originally our worst case scenario – turns out it’s looking like our best case scenario.)
3. The baby has other abnormalities on the right side of the heart. They don’t know that this is necessarily a problem as the heart is currently functioning just fine. Apparently, it’s not uncommon for HLHS individuals to have other heart abnormalities – the heart, after all, has to figure out a new way to function. There could be more abnormalities in the heart – since they couldn’t get a good look yet, it’s possible. We’ll know more when baby is born.
The big question will be whether baby will be a candidate for surgery. Because there is complete blood flow reversal to the brain, there is a 20-25% likelihood of a brain abnormality. This can range from a mild learning disability to severe mental retardation or seizures. In the latter case, it really becomes a quality of life issue and putting a child like that through such strenuous surgeries.
So, it looks like baby will be born at Cedars as planned and will undergo an immediate complete cardio, neurologic and other workup to make sure there’s nothing else severe going on. If nothing else is going on, baby will hopefully be a good candidate for surgery and will be transferred to Children’s Hospital LA for the first surgery within 7-10 days of birth (sooner if possible). If there are other severe problems, particularly neurologic, then it will become a quality of life discussion and the surgeon may recommend comfort care only. It sounds like the odds are in our favor of there being no neurologic issues, but the risk is not insubstantial.
So, where does this leave Dusk and I in the midst of all of this craziness? Remembering that God is in control and just trying not to stress. Baby appears to be doing well and the cardiologists see no reason baby won’t make it full term. We figure there will be enough stress and reason to cry and worry once baby is born, there’s no reason to add to the stress now. So, we’re just going to take this pregnancy one day at a time and enjoy the miracle of life that is growing inside me. I’ve said this before and it bears repeating – there are so many women who never even get the opportunity to feel a baby kick in their womb. I don’t want a diagnosis like this to make me forget that fact. Every pregnancy is a miracle and every child is a gift from God – as parents, it is our job to love our children as long as we’re able to. So, we’re going to try to enjoy the normalcy of our lives until the end of February, when everything will be turned upside down.
If you could please continue to pray for a miracle for Baby (no, we are not finding out the sex!) and peace for all of us over the next few months, we’d really appreciate it. We know that God’s hand is in all of this and we never have to go through anything alone. That gives unbelievable comfort. We don’t anticipate learning anything new until after baby comes, but if anything changes, we will certainly keep you all appraised.
Sunday, October 4, 2009
Our first inclination something was wrong with Baby Bennett
We went in for what should’ve been an hour ultrasound on Thursday and left about 6 hours later. There's a really serious abnormality in baby's heart. The aortic valve is small (and may not actually be working at all - they're not sure) and there's a hole between the two ventricles that shouldn't be there (that's actually what's keeping the baby alive as it's not otherwise getting blood to the left ventricle due to the inoperative aorta). It looks like the heart has developed a work around to get blood flow to the left ventricle, but that work around only works so long as a valve remains open, but the valve in question is one that is open in utero but closes within days of birth. The good news is that, based on what the pediatric cardiologist saw today, she thinks we have a good likelihood of making it to term. It’s pretty early for them to tell exactly what’s going, but they’re reasonably certain it’s one of 2 things (only time will tell):
Scenario 1: Aortic Atresia with Venticular Septal Defect (Best case scenario)Everything stays exactly as it is and the body keeps pumping blood through that hole. Within 48 hours of baby's birth, they put baby on medicine to keep the valve open temporarily and within the week, baby is moved to Children's Hospital LA and has open heart surgery to replace the valve. This surgery has a 5-10% mortality rate. Baby stays in Cardiac ICU up to a month and then goes home. Someday, baby will have to have another surgery to replace the valve (somewhere between 4-5 and the teenage years). These kids are otherwise normal, completely active kids and can participate in sports and everything else.
Scenario 2: Hypoplastic Left Heart Syndrome (HLHS) (Worst case scenario)The left ventricle gets less and less blood flow and eventually stops working altogether sometime before baby is born. Within 48 hours of baby's birth, they put baby on a medicine to keep the valve open, move baby to Children's Hospital and do a more invasive open heart surgery within the first week. Baby stays in hospital a little longer than under Scenario #1. This surgery has a 10-15% mortality rate. Baby goes back at 4-6 months for surgery #2 and then at 4-6 years for surgery #3. Fatality rates from surgeries #2 and #3 are somewhere between 1 and 2%, but approx 10-15% of babies die between surgery #1 and #2. These kids go on to lead more or less normal lives, but are more sedentary due to the fact that they really have only one functional ventricle. As the doctor put it, "they're not going to be Olympic athletes" - but well, let's face it - with Dusk and my genes, this kid wasn’t going to be an Olympic athlete anyway. The doctor seems to think we'll fall into Scenario #1 based on what she's seen already, but we won't know for a few more months. She's going to follow me with fetal echocardiograms every 4 weeks and we'll go from there. The good news is that we’ll know before birth which scenario we’ll fall into.Obviously, we're stunned and (and yes, the thought “can’t we just catch a break” has run through our minds). But the silver lining in all of this is that we live in Los Angeles with really world class hospitals - and Children's Hospital LA (where baby will most likely be treated) is an awesome hospital, so we'll be in the best possible hands.
So, even though we're a bit overwhelmed, we're feeling positive and like this is something we can handle and something that can be fixed - thank God for that! But, we could some prayers for baby and us. Specifically, we’re asking for a miracle – that the problem resolves itself before birth and baby won’t need any surgeries (btw, the doctor was pretty clear this wasn’t likely to happen – hence, why we’re calling it a prayer for a miracle). And if that’s not in God’s plan, just for peace and good doctors to help us and baby through.
Thanks everyone and we’ll make sure to update once we get closer to baby’s due date and know more!
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