Monday, February 11, 2013

Asher James's Heart Story

In honor of CHD awareness week, I thought I would share our heart story in it's entirety. For those who already know it- sorry!

During my pregnancy with my third child, at our routine 20 week ultrasound, my world changed. I found out that my son had something wrong with his heart, though at that point they didn’t know what the extent of the problem was. There were parts of the heart that should be present, but they couldn’t see them. I was terrified. I had to wait a month before we could see a pediatric cardiologist and have a fetal echocardiogram (ultrasound of the heart of the baby), which would give us more answers.

Rather than remain terrified, I studied. A LOT. I was on the computer for hours at a time, learning all I could about the heart, how it functions, what the prognosis is for various heart defects, and what the process is for repairing the different defects. I was very prepared when we met with the pediatric cardiologist. At the first ultrasound, we found out that they thought our son had a condition called Tetralogy of Fallot with Pulmonary Atresia. It wasn’t the best case scenario I hoped for, but it wasn’t the worst. He had two holes in his heart, his aorta was large, and in slightly the wrong place and his arteries that supply blood to his lungs were either very tiny, or non-existent, because they couldn’t see them on the ultrasound. We scheduled another ultrasound for later in the pregnancy.

I can’t count now how many times I had fetal echocardiograms done during the pregnancy, or how many specialists we saw- geneticists, high risk OB/GYN’s, pediatric cardiologists, case workers. Each appointment had worse news. His condition was more complex than they initially thought, and he might have a chromosomal problem. In spite of everything, I stayed very upbeat. It wasn’t a picnic, but I coped. By the end of the pregnancy, my husband had wrapped his brain around it all as well. We felt as prepared as we could be for his birth.

Asher was born on my birthday, in April 2010. The labor was induced, but I was determined to have a natural delivery in spite of everything. I was still able to have my midwife deliver him at the hospital. He was immediately taken to the NICU after he was born, but I was able to hold him very briefly before the umbilical cord was cut. He was beautiful. I was happy.

Once he was born, they were able to see his heart much more clearly, and fine-tune their diagnosis. Asher’s official diagnosis: Tetralogy of Fallot, Severe Pulmonary Atresia, Discontinuous Pulmonary Arteries, and MAPCA’s. Translation: He has two holes in his heart, he had very tiny arteries supplying blood to his lungs, but they didn’t connect to his heart in the typical way. There was a small connection to the aorta, and that is what was supplying blood to those arteries. He was missing his pulmonary valve completely, as well as the main "trunk" of his pulmonary artery. He had extra arteries that grew out of his aorta and supplied additional blood flow to his lungs. He tested negative for the chromosomal disorder (which was a good thing- it would have complicated things further).

He stayed in the hospital for eight days after he was born, and came home on oxygen. When he was 4 weeks old, he had his first open heart surgery (coincidentally, on my daughter’s birthday). They were trying to get those teeny tiny arteries to grow, so they could buy some time and Asher could grow larger before he needed a major repair of his heart. One week after surgery, he came home again. We enjoyed our summer with Asher.

In August, it became clear that he was not doing well. We scheduled his next surgery for that October at Stanford (their surgeons specialize in heart defects like the one my son has). In September, Asher’s condition continued to deteriorate. He was placed on oxygen, and his cardiologist called Stanford and had his surgery bumped up. We received a phone call on a Tuesday, informing us that we needed to fly out the very next day (my son’s birthday- this baby had a thing or birthdays!) to Stanford. We quickly changed our flight arrangements, arranged care for our two other children, found a friend-of-a-friend-of-a-friend-of-a-friend to stay with (thank you Facebook!), and we were off.

There was a lot of pre-operative testing to do, blood work, imaging, etc. The following Monday Asher went in for a surgery called a complete unifocalization. The surgeon closed the holes in Asher’s heart, placed a graft to widen his tiny arteries, placed a new pulmonary valve from a cadaver, place a cadaver "conduit" for his main pulmonary artery, disconnected all but one of the "collateral" arteries, and took one of the collaterals, disconnected it from the aorta, and grafted it into his branching pulmonary arteries. The surgery took twelve hours; he was the second surgery of the day, so they didn’t finish until 1 am.

Asher was a rock star, and recovered quickly. We enjoyed our time in Palo Alto as much as we could- we read books in the sunshine on the patio off of Asher’s room in the ICU while he slept and recovered. We made amazing new friends with the family we stayed with. We ate wonderful meals supplied to us by virtual strangers.

After one week, Asher was discharged from the hospital. We went home and resumed our life.
Exactly one year later, Asher needed to have open heart surgery again. This time we were able to stay locally (thankfully- since I had just had a "surprise" baby 2 months prior. Don’t worry, we are officially done now!). The new valve and conduit that were placed in Stanford had failed, and needed to be replaced. This time Asher surprised everyone, and was out of the hospital only 3 days after surgery!

We are almost 1 ½ years post-op, and he is still doing well.

Asher is an amazing little boy. This isn’t the end for him; he will always need more surgery and is monitored by cardiology every 6 months. He has residual problems because of all of the surgeries- he is quite small for his age, he has speech problems, a sensory disorder, feeding issues, and behavioral issues.

But he is the happiest little boy you will ever meet. He greets everyone with a hug, and just exudes joy. I wouldn’t change any of what we have experienced. I have grown so much. I appreciate my children more. My marriage is stronger. I am stronger. I have even discovered my passion and I am currently completing my BS and plan to apply for medical school in two years.

My take away from everything is: sometimes, bad or scary things happen. There is no rhyme or reason to it. I had a choice to make when I found out about Asher’s condition. I could be scared, be angry, and wonder "why me?"and let that fear and anger eat at me and destroy my life and marriage. Or I could face the challenge head on, strengthen myself with knowledge, and remain happy, upbeat, enjoy all aspects of this life- the good and the bad, and find something to be learned form every experience. I chose the latter.

1 comment:

  1. Hi Cousin! How are you?
    It's been a while.
    Your blog is the only way I know how to get in touch with you...without getting out my phone and calling around for your #. (that just be too hard right?)

    anyhow. this is totally late....but when you have a spare chance, would you email the pic you took of my fam. at grandpas funeral?


    My email is