Congenital Heart DefectsD&EHypoplastic Right Heart SyndromeStoriesTricuspid Atresia

Asher’s Heart

Asher's Heart

Editor’s note: By special request of the author, this story is published exactly as it was submitted to us.

We were crushed, devastated, horrified. The rug had been swept out
from under us. In a
matter of a few days, we had gone from excited to meet our little boy
to hearing we may never
meet him and on top of that, we had to make that impossible decision.

By Jeannine

April 29, 2021 was the worst day of my life.

That previous Monday night, we had definitively felt our baby boy
moving for the first time.
My husband and I sat for several minutes, in awe of the twists and
turns we could feel scraping
across my belly. On top of that, my belly had finally “popped” and I
was actually looking
pregnant. After having lost our first pregnancy early on, we were
constantly hesitant to get too
excited but it felt like things were getting so real. And on top of
that, at 21 weeks, I thought by
now surely we were in the “safe zone.” I was so excited for our
ultrasound appointment the
next day that my husband was going to get to see our baby boy live!
We had talked about wanting to pick out a few names and then decide
which one fit best once
we actually met him. But we had a favorite and had discussed that
night we knew his name, it
was Asher. It means fortunate, blessed, happy one.

The next day at the ultrasound appointment, I lay there marveling at
how perfect our little Ash
looked. His little smiling face, his spine, his ten tiny fingers and
the tech even pointed out his
little boy part. Then the tech told me he thought I had a low sitting
placenta and the doctor
would talk to me about it. He printed out some pictures of Asher for
us and sent us on our way
with some paperwork about placenta previa. I suddenly felt sad knowing
the chance to deliver
my baby naturally may be taken away from me but my husband reassured
me and said the tech
seemed to look at his heart a lot so as long as he is healthy, we will
all be ok.

I was at work the following day when I got a call from the genetics
counselor. She informed me
there had been a finding with my baby’s heart. She described there are
4 chambers to the
heart and it appeared one was not developing correctly. She asked if
we could come in the
next day to meet with the pediatric cardiologist for an
echocardiogram. My mind was swirling
and I asked if this was something that could correct itself in the
womb. She told me no and that
it was usually corrected after birth with a series of surgeries.

I felt like the wind had been knocked out of me. I left work and when
I got home, I crumbled on
the floor sobbing while my husband held me. I cried the rest of the
evening, worried what we
were going to hear the next day. I told my husband luckily, though it
sounded bad, the genetics
counselor made it sound like it was treatable and it didn’t seem like
we were going to be forced
with a decision to end the pregnancy.

The next day was April 29th. I spent the morning anxious for our
appointment. I kept rubbing
my belly and told our little Ash, don’t worry, we are going to find
out what is going on and we
are going to do whatever we have to for you. I spent a moment sobbing
on my knees while I
begged God to please protect my baby. I said I NEEDED him to be ok and
asked why, why my
baby.

During the echocardiogram, we loved getting to see our Ash again. He
was moving all around
and dancing. At one point, we saw his face up close and his lips were
moving in a sucking
motion and my heart melted. I remember the whole time thinking in my
mind repeatedly, please
God just give us best case scenario for our little Ash. The tech
studied our baby boy for a
long time and kept mentioning how wiggly he was. She snapped a couple
pics for us and one
looked like he was smiling. Then she told us the doctor was going to
come in and talk to us.

Although the moments that came next were the worst moments of my life,
I am forever
grateful for that doctor’s compassion and honesty. He walked us
through the scan and all the
medical terms… Tricuspid Artresia, Hypoplastic Right Heart Syndrome
and then broke it down
for us. This was far from best case scenario. Our baby boy had an
incredibly rare heart defect.
He shared they have not found a link to any genetic or environmental
cause and really it was
basically just hitting the shit lottery. While Asher was in my belly,
my body would protect him
and assist his heart to beat but the harsh reality is I couldn’t
protect him forever. Once he was
born, he would likely immediately be put on medication followed by a
series of 3 surgeries with
the last being the Fontan procedure. But this was not a fix. It was a
temporary band-aid and
ultimately you cannot live with half a heart. He would at some point
need a heart transplant.
On top of that, the strain of the defective heart caused several other
issues like liver failure,
lung problems, eating issues and development problems. The surgeries
sometimes resulted in
a stroke or even brain damage. There were several questions that
followed and I don’t
remember when it happened but suddenly I realized the conversation had
switched to “IF” you
decide to continue this pregnancy. We set a follow-up appointment for
the following Monday
for a second opinion and went home.

We were crushed, devastated, horrified. The rug had been swept out
from under us. In a
matter of a few days, we had gone from excited to meet our little boy
to hearing we may never
meet him and on top of that, we had to make that impossible decision.
We spent the next few
days sobbing in each other’s arms, accepting that we had been handed
the shittiest lottery
ticket. We cherished each kick and flip, because now he was super
active, all while soaking in
the ultimate decision we had to make. I also started researching like
crazy. I wanted to gather
all the information I could to make the best decision. No matter how
hard I looked, it was all
the same information that brought us back to the same terrible
decision with no easy answer.
One article I read stated it was crucial for doctors to fully explain
the Fontan procedure
because parents would often decide to instead of the procedure, choose
to make their children
comfortable for their remaining time. That was when it finally hit me
just how serious this was
and it devastated me to think how much our Ash would suffer.

Finally, I researched what other parents have done when faced with
this impossible decision
and I stumbled across a parent’s story called Letting Poppy Go from
this website. It hit so close
to home and was such a beautiful story it finally gave me some piece
of mind and ultimately
helped me to make a decision.

The next morning I woke up with the lyrics to “To Make You Feel my
Love” by Adele stuck in my
head and repeatedly played it to my Asher while singing between tears.
I had promised him, no
matter what, we would do whatever it takes for him. I promised I would
always love and
protect him in the best way I could and I realized a sense of peace
knowing what we had to do.

We spent the next several days trying to cherish as much as we could
our remaining time with
our baby boy. I wanted him to only know happiness, joy and love
because that was what he
had brought to us. We sang and talked to him and tried to share
experiences with him that we
had now accepted we would have to share with him in a different way
than we had originally
planned. My hands clutched my belly constantly and I smiled each time
I felt him move, all the
while knowing the day was coming when I would no longer feel him. I
also spent a lot of time
sobbing. My belly would tighten with each giant sob and I would tell
Ash it was just mommy
hugging him extra tight. It was excruciating knowing the inevitable
was coming. I dreaded
going to bed each night because I knew each new day brought us closer
to the day we would
have to say goodbye.

When it came time to begin the procedure for the D&E, the doctor said
because of the placenta
previa, she was worried I may hemorrhage so she wanted me to stay in
the hospital overnight
until the procedure the next morning. My husband and I packed our
hospital bag and stayed
the night in the post partum wing. It was heartbreaking feeling like
we were going through the
motions of having our baby knowing that we would be leaving the
hospital the next day with
empty arms. I kept my hands on my belly all the way up until the
anesthesia kicked in
desperately wanting to feel each and every last movement. To add
insult to injury, my milk
came in 2 days later reminding me I had no baby to feed it to.

It has been 2 weeks since we let our Asher peacefully go and I still
struggle daily. I am so sad
and I miss him deeply. But despite the sorrow, I find peace in knowing
that we can take all of
the pain so that he will never have to suffer. I am warmed by the
happiness, joy and love he
brought to our lives and our friends and family. I smile when I think
of the happy, wiggly baby
he was in my belly and cherish knowing because of the decision we
made, he will get to always
be that way. We were able to keep our promise that we would do
whatever it takes to protect
him so that he forever will remain our fortunate, blessed, happy one.

Photo by Michael Fenton on Unsplash