I guess the best way to put this is that we now know a lot
more about what we might face in the months ahead, but we still don’t know exactly
what we will face.
In other words, we still don’t have definitive answers as to
what our boy’s situation will be, but we have walked through the many possible scenarios
with doctors so we can be prepared.
The biggest news to come out of our echocardiogram and meeting
with Children’s Hospital cardiologists is that the muscle growing abnormally
under my son’s heart is the most serious of his ailments.
Not the Double Outlet Right
Ventricle (DORV). Not the Coarctation of the Aorta. Not the hole in the heart.
This is a fourth problem.
So, something I didn’t even
mention in my previous post is now the scariest thing we face. For those who
want to go back to the first post on this subject, you will see that I
mentioned a problem Brooke and I seemed to hear different verdicts on, in terms
of whether it could be fixed or not.
That was this muscle.
The good news is it can be fixed.
Like I said before, I am glad to lose this argument to Brooke.
The best thing we heard from the
docs was that all of these things can be fixed and our son could ultimately
live a normal life. I specifically asked about sports, exercise and other
physical activities, and the doctors said all of that is possible.
But it seems like a series of
little miracles are going to have to take place for that to happen. And, he
will still be monitored by a cardiologist all his life who ultimately could
pull the plug on his budding athletic career at any point if he or she sees signs
of trouble.
The worst thing we heard is that
even if all goes well with the heart, he could still have other problems –
brain development issues or genetic disorders – that keep him from being
normal. Two of the more common genetic disorders would be DiGeorge Syndrome,
which results in a poor immune system, cleft palate and blood and behavior
disorders; and heterotaxy, which, as near as I can tell, is a serious problem
where the internal organs don’t function properly.
But the chances of these are
small. Right now, I am concentrating on the problem at hand, which is the
heart. That is a life or death deal, my friends. If his fragile body can
survive the operations and surgeons can work their magic, we will take on
whatever else is thrown our way with renewed enthusiasm.
Here are some of the scenarios we
face on the heart front:
·
He is born, taken to
Children’s Hospital, given an echocardiogram, monitored for a few days and it
is determined the coarctation has healed and the does not need an immediate
operation. Also, the abnormal muscle does not need to be addressed right away. In
that case, he is sent home for a few months and comes back for one open-heart
surgery, where the muscle, hole and DORV are fixed.
·
He is born, taken to
Children’s Hospital, given an echocardiogram, monitored for a few days and it
is determined he needs to have the coartation addressed, but they can go in
through his side, as opposed to open-heart surgery. In that case, they would
fix the coarctation, send him home and bring him back in a few months for open-heart
surgery, where the muscle, hole and DORV are fixed.
·
He is born, taken to
Children’s Hospital, given an echocardiogram, monitored for a few days and it
is determined the coarctation or muscle under the aorta must be addressed
immediately with open-heart surgery. In this case, they will likely also fix
everything (coarctation, muscle, DORV, hole) at the same time, with one
surgery.
While this actually sounds like
the best thing, it is not. One, they don’t like to crack open the baby’s chest
that early and two, open-heart surgery at that early age has been known to cause
brain development problems. Not always, but the risk is higher. They only do
open-heart surgery in the first 30 days if it is totally necessary.
Why can’t they tell us what
scenario we will face? The echo just couldn’t give enough detail. And as the
baby grows, it actually becomes harder to see what they need to see. No further
echocardiograms are planned.
So we really won’t know until the
May 10 C-section what we are facing. I’ll plan on riding in the ambulance with
the baby to Children’s Hospital Medical Center and relaying information to
Brooke as she recovers.
Still, meeting with the doctors was
very helpful. It is easy to see why this is the third-rated Children’s Hospital
in the world – something they are not settling for, mind you. They have a plan
in place to jump over Philadelphia and Boston.
They took all the time we needed
and explained everything very thoroughly, answering all our questions. We spent
more than three hours with them.
Our surgeon – who was recruited
out of Texas and is considered one of the best in the country -- was unable to attend due to emergency surgery.
This was a complete bummer to me, but, as my wife explained, if it were our
baby in need of that emergency surgery, we’d want other parents to understand.
They did take us to the Cardiac Intensive Care Unit and show
us around, displaying what our room would look like and detailing what our life
will be like. You can sleep there, shower there, eat family dinners there…pretty
amazing and very nice for families who have to travel much further than the 20
minutes it takes us.
If he has that immediate major surgery, he is expected to be
in the CICU for up to three weeks. If they go in through the side, he should
recover more quickly. I’m not sure how long he will be in if/when we go back
for the other surgery.
I did learn that our child has a form of DORV that is
defined by aortic obstruction. This is the rarest form, so I would assume it is
the worst form to have. The doctor said they see about 20 cases of DORV a year
in the three-state area (Ohio, Kentucky, Indiana), but he has only seen about
six in his four-year career that are the same type as our son’s.
The coarctation isn’t quite as rare, but it still is not a
common thing. He said they see about 15 a year where there is no other type of defect.
We, of course, have another type of defect, so I would assume the rates of
those are a little more common.
Not sure how rare the muscle problem is, but since it is the
most serious, I have to believe they don’t see a lot of those, either.
While they did tell
us everything is fixable and he can ultimately lead a normal life, they also
cautioned that even if some of these things are fixed, they could ultimately
become problems again that require follow-up surgeries. The muscle could grow
back. Re-coarctations do occur. The patch used on the ventricles might need
replaced.
“We’ll be watching him like a hawk,” one doctor said.
Me too, my friend.
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