The cause of something like this is
generally unknown. It starts at the cellular/structural level, before her heart
even started beating. Basically, the cells just didn't form together
correctly. Of course, that was one of the first questions I asked,
freaked out I could have done something to cause this...but I was assured there
was absolutely nothing I could have done to cause or avoid this. It is not because of my MTHFR (folic acid
deficiency/blood clotting disorder) or anything like that and it is not typically
genetic though it does coincide with some genetic disorders. About 1000 babies a year are
born with it. My doctor actually
described it as “astronomical” chances.
I am the 3rd patient in 28 years that she has seen with a
baby that has it.
I went to my 20 week OB appointment on Dec 23rd
all excited to finally see her little profile and get visual proof that she was
in fact, a girl, even though I had no doubt, I still enjoy the confirmation, no surprises... This was a full work up sono, meaning they
use a more detailed sono machine to
check everything out, organs and all,
especially spine and bone structure because of my existing condition
(MTHFR)… they want to make sure everything is forming and growing as it should,
MTHFR is often associated with neural tube defects. The sono tech says
everything looks great, except …“Well guys I am sorry to tell you this, but
this baby has a severe heart defect.” Wait. WHAT??? I just laid there
stunned. Donny literally thought he was
about to tell us a joke. We asked some
questions just to make sure we heard him right, the tears started. Then he said
he was going to talk to the doctor and get us a room ready so we wouldn’t have
to sit in the waiting room to wait on the doctor…and to take as much time as we
needed. Pretty sure the entire waiting
room could hear me wailing after he left.
My doctor (Dr. Cynthia Robbins) answered as many questions
as she could but referred us to a specialist at Harris Downtown. We had to wait until the 26th ,
because of the holidays, to see the specialist so that he could confirm for
sure that she had HLHS and to ensure there were no other issues going on with
the organs etc. that would be a cause for concern. IF anything else was wrong with her in that
way then we might have to consider terminating the pregnancy. Tears. You have
GOT to be kidding me?!? Do you know what they do at 20 weeks when you have to
terminate your pregnancy?? They make you go into labor. Terrible. Horrible. I
cannot and do not want to imagine what that would be like. The thought literally made me sick. Tears. The doctor then tried to ease our
minds with the “BEST case scenario” which would be that I carry her to term,
have a normal labor, and then she immediately go into surgery. Tears. Open
heart surgery, on a newborn baby, my
newborn baby. Lots and lots of tears.
This was easily the longest day of my life. If time was ever to stand still I am pretty
sure it would feel a lot like that day. By
the time we went to bed, I had accepted that my baby would have to have surgery
but that she would be ok. For the next 2
days I think I went into denial and prayed, prayed, prayed that everything was
perfect with this baby girl except for her tiny heart. Being surrounded by family and celebrating
Christmas was the best way to take our minds off of everything. I was
honestly at peace with it, I knew God would take control, and he did.
The specialist, Dr. Tabor who is the Medical Director of
Obstetrix Medical Group, said everything looked normal except of course her
heart which was, as the previous sono showed, hypoplastic. He zoomed way in so we could see. Basically, we all have a 4 chamber heart;
hypoplastic babies have a 3 chamber heart with a teeny tiny 4th chamber. That tiny chamber is responsible for pumping
oxygen rich blood to the rest of the body.
When the lungs cannot receive that oxygen rich blood the baby cannot
breathe well. Within a few days after
birth the little valve that allows this blood to flow will close and then the
baby will stop breathing. In order for
this not to happen, the newborn will be given medicine to keep that valve open
and the artery dilated until ready for surgery. Since the lungs are the last to
develop, it will depend on how well the baby’s lungs are responding to the new
world to determine when surgery will take place. They want the lungs to be as
healthy as possible. I will carry her to full term; they will wait
until I go into labor. He said a VBAC is
still plenty possible, it is not more traumatic than a C-section or anything
like that. It is actually good for the baby to go through the birth canal
because it will “squeeze” all the excess amniotic fluid out of the lungs
etc. So, the next step was to do an
amniocentesis… that was another tearful terrifying moment. I have only just heard horror stories
about amnios but Dr. Tabor assured me I
was in “expert hands”. I was given the choice but he explained the
best way for us to be fully prepared for surgery was to find out everything we
can about her. In the end I decided that if a newborn baby can have open
heart surgery, I think I can handle a needle in my belly, scary chances and
all. It really was not that bad…a tiny
needle prick on the outside, then a mild cramp when the needle went through the
uterine wall, lasted about a minute. The
hardest part about the whole ordeal was that I could not hold my Avery (almost
2 years old) for 3 days! Neither of us liked that much…daddy had to put her to
sleep those 3 nights and she still wants him to now lol…and sing her “Twinkle
Star”…bittersweet.
The surgery part is a bit unnerving… she will actually go
through 3 surgeries within the first few years of life…the first at birth, the
second at 4-6 months, and the third at 2-3 years. They have only been doing these surgeries
since the mid-80’s so the oldest survivors of this condition are in their 20’s
and 30’s now. Some have had additional surgeries, pacemakers, heart
transplants…all possibilities BUT many are perfectly fine and healthy, in
sports, have had kids, living the life they want and are thriving. Technology
has come a long way and will only get better. I am SO thankful we live in a
time when “fixes” are possible and available!
So, next we go see Dr. Roten, the Pediatric Cardiologist at
Cook Children’s here in Fort Worth. They
will do a fetal echocardiogram which will paint a better picture of what
Hallie’s heart looks like with all the little veins and arteries. This happens on January 14. Then on January 20 we will have a repeat sono
with Dr. Tabor, the specialist.
We are extremely optimistic about everything. I just know it
will all be ok. Like I said before, I really am at peace with it. I am not going to lie tho…come May I know I
will be a crazy nervous wreck but for now we are all ok. Focusing on
appreciating my pregnancy and my belly and feeling her moving and knowing that
it is all in God’s hands and it is completely out of my control. He has already provided so many resources
and positive influences into this situation it is unreal, which makes it that
much easier to trust in HIM. I am truly
amazed. I know he will amaze us even
more in the months to come.
We decided on the name Hallie Grace a month or so, before we
found all this out, I was even surprised by the meaning… He was speaking to our
hearts even then…
The meaning of the name Hallie is: “Praise The Lord” short form of the word
"Hallelujah"
The name Grace is derived from the Latin 'gratia', meaning God's
favor.
I say
it means, through the Power of God and by the Grace of God she will thrive and
be our beautiful little angel sent to bless our lives greatly!
