Baby Joey and how his scar went viral

In honor of CHD awareness week, I will be sharing a few stories from Heart parents to help show the world how important CHD awareness is and the need for pulse ox screening. Read how baby Joey is helping to do just that.

My name is Sarah Powling, and this is the story of my son, Joey. 

My husband, Joe, and I were overjoyed to learn that I was pregnant with our
first child. We found out in December of 2011, which made telling our families
the perfect Christmas gift. Then on Valentine’s Day we found out that we were
having a boy, and we could not have been any more excited! Everything had been
going great. I had a little bit of morning sickness, but it was nothing that I
couldn't handle. Joe and I were so eager and thrilled to start our own family.
On March 16, 2012 I went to my doctor’s for a routine ultra sound. The ultra
sound tech mentioned something about not being able to locate Joey’s second
kidney. She explained that it was probably just the way he was positioned, but
she wanted to send me for a level 2 ultra sound just to be sure. This was the
first time that I began to worry, but just a little bit. I had a feeling that he
did have both kidneys, so I was more annoyed than anything that she couldn't see
the second one, but a small shred of doubt did linger in my mind. I didn't let
it bother me too much, though, and I continued on with my daily life.

I made an appointment for the level 2 ultra sound, but I didn't schedule it for 3 more
weeks because that was the next opening at my local hospital, and I didn't want
to have to travel all the way down to Boston. I also figured that if he did only
have 1 kidney, then there wasn't anything they could do about it anyways, so
what was the point of rushing. If I had only known what was in store for us.
April 6, 2012. That was the day. It was on this day that my life would change
forever. This was the first day that I truly learned what worry was, and I
haven’t stopped. I think most mothers feel this way after their child is born,
but for my husband and me, this feeling came early and very unexpectedly.
As I lay on the table for my level 2 ultra sound, I watched the monitor closely.
Almost immediately the tech was able to find both kidneys! Joe and I were so
relieved! I remember thinking that I knew he had 2 kidneys all along and I just
couldn't wait to get out of there so we could carry on with our day. But then
she continued the ultra sound for another hour. It was after about 10 minutes
that Joe and I began to wonder why she was continuing to scan me since she found
what we were looking for, but I just kept trying to convince myself that it was

Finally, a doctor entered the room. She did not greet us. She did not introduce
herself. She just uttered the words that I will never be able to erase from my
memory: “I am very worried about your baby’s heart.” I was in shock. I thought
she had the wrong person. There was no way that this was happening. The doctor
must have seen the look of confusion on our faces because she then said, “What
were you guys told you were coming here today for?” “We were told that they
couldn’t find the baby’s second kidney,” I explained. And then more words that
stab me like a knife every time I think about them: “Well, the baby has 2
kidneys, but he has a serious complex abnormality with his heart.”
The rest of the appointment was a nightmare. I began crying hysterically. The
doctor told my husband that he had to get me under control so that she could
then perform another ultra sound. She confirmed that there was a heart defect,
and then she began to rattle off about 10 different kinds of heart defects that
it could be, most of them sounding horrific. She said that my baby might not
survive and that I would have to transfer all my care to Boston. She explained
that when parents find out that there is a serious problem with one of their
baby’s organs, many times they choose to end the pregnancy. She continued to
remind me several times that abortion was legal in Massachusetts. I couldn’t
even wrap my mind around what was happening!

We then had an appointment in Boston, where a pediatric cardiologist was able to
confirm that Joey had a heart defect known as Tetralogy of Fallot (TOF).
Luckily, this was not one of the completely horrific conditions that the
previous doctor was rattling off; however it did mean that Joey was going to
need open-heart surgery soon after he was born. Tetralogy of Fallot is basically
a combination of 4 different heart defects, but the good news is that with
surgery everything was completely fixable. Joey was going to have a tough road
ahead, but then he would be able to live a normal life. He was going to be just

There were so many emotions going through my head at that time. I was so angry
and disappointed that this was happening, especially because it was so random,
and I had worked so hard to eat right and exercise during my pregnancy. I didn’t
even have caffeine! I kept asking myself why. Why did this happen? Why did Joey
deserve this? Why did Joe and I deserve this? It was difficult, though, because
at the same time that I was so upset and angry, I also felt relieved. I was so
thankful that this condition could be fixed, especially because I had begun to
research so many heart defects that were much worse. The rest of my pregnancy
was very nerve-wracking, and it was not a fun experience. Extra check-ups, extra
ultra sounds, extra fear. It was hard to see other people with their babies. It
was annoying that we had to go to Boston every week, as we drove by the local
hospital that was 5 minutes away from my house. It was definitely not what I
imagined, and the innocent excitement that we felt at the beginning of the
pregnancy had soon turned into complete anxiety.

When I was 36 weeks pregnant, one of my almost weekly ultra sounds showed that
Joey didn’t seem to be gaining enough weight. It was then that the doctors
decided that I would be induced at 37 weeks. The date was July 27, 2012.
At 8:01pm Joey made his debut at 5 pounds, 8 ounces and 18 inches long. He was
immediately taken to the corner of the room with several doctors from the NICU.
My husband was able to follow and cut the umbilical cord. The good news was that
he was pink, and he was breathing on his own! This was wonderful because many
times, babies with TOF are born blue and are not breathing. After about 5
minutes, they finally brought him to me. I was able to hold him for another 5
minutes before they brought him to the NICU.

Joey was in the NICU for 1 week. It was the most horrible week of my life, which
is really sad, because it should have been the best. During his stay in the NICU
he actually did really well; however they had to keep monitoring him and
checking his stats because there was a chance he could turn blue at any time and
stop breathing. I was trying to recover from giving birth, but I wanted to spend
every moment in the NICU with him, so that was very hard. I am grateful that I
did not have to have a C-Section because I do not know how I would have been
able to move around. It was already hard enough. I was lucky because Joe was
able to take time off from work, and we had family members there with us every
day. I also received a lot of support from family and friends through text
messages, e-mails, and Facebook. Just knowing that so many people cared for us
and were thinking of us truly helped me get through that time. I don’t think I
can ever describe how much everyone’s support meant.
After a week in the NICU, Joey was continuing to do so well that they finally
let us take him home. It was a very stressful time at home, though, because
there was always a chance that he could stop breathing and turn blue. “Don’t let
him cry,” the doctors advised, because that increased his chances of turning
blue and not breathing. Yeah, that was easy, don’t let a newborn baby cry. Were
they kidding? Nope. Luckily Joey was such a good baby, and he really didn’t cry.

Thank God, because I don’t know how we would have handled it if he did.Joey was home for 3 months before he had his open-heart surgery. He never turned blue! He was hospitalized several times because he got dehydrated and his stats weren't as good as they should have been. That is why Joe and I were so relieved when it was time for his surgery.

October 25, 2012 was the day of Joey’s surgery. We were away from him for about
7 hours, and he was in the operating room for about 5. Again, the tremendous
amount of support we received from family and friends was what got us through
those terrifying hours. They had to break his breast bone to get to his heart,
and then they had to stop his heart for over 2 hours while they worked. It was
such a helpless feeling to just sit there, but in the end it was all worth it
because Joey’s surgery was a success! Seeing Joey after surgery was one of the
best moments of my life. I’m sure he looked awful to anyone else, hooked up to
tubes, machines, and monitors. But to me he looked perfect! His cheeks were rosy
and red, his lips were red, and his skin was one solid healthy color. It was
such a relief to know that he had been fixed.

Joey was at Boston Children’s Hospital for 5 days during his surgery stay. His
surgeon (Dr. Pigula), cardiologist (Dr. Geggel), and surgical team were
unbelievably awesome, and we felt very confident in their abilities to help our
son. During his stay we learned just how highly skilled and trained his surgeon
really was. Thankfully, before Dr. Pigula made the cut into Joey’s heart, he
double checked to see where the coronary artery branches were. Had he not done
this, he would have cut right through one of them, and the outcome would have
been devastating. For some reason, Joey’s coronary artery branches were in a
different place than they normally are, and this never showed up on any ultra
sound or echocardiogram that he had. It is perfectly okay for them to be where
they are; however, they were right where the cut was supposed to be made.
Luckily, Dr. Pigula saw this and was able to make the cut from a different
angle. This made the surgery a little more complicated, and because of this,
Joey’s pulmonary artery, which pumps blood to his lungs, was not able to be
widened as much as they had hoped.

Before Joey left the hospital, he had a sedated echocardiogram, where they were
able to determine that his pressure gradient (which is related to the narrowness
of his pulmonary artery) was at 22%. This was not bad, as anything under 30% is
acceptable; however after surgery, they typically like it to be at about 10-15%,
so they explained that they would have to monitor it. Before his surgery,
though, his was 77%, so his operation was definitely a success.
During Joey’s hospital stay, we were finally able to remove the bandage covering
the incision on his chest, and we were able to see his long scar. I wanted to
take a picture of this, and as I began snapping photos, Joe was playing with
him, and Joey started smiling. I was able to take a really cool picture of Joey
smiling with a giant scar going down his chest and stomach. I didn't think much
of it at that point, but I did think that it was awesome enough to post to my
Facebook page, which I keep private, for family and friends to see it.
A couple days later, my brother asked if he could post the picture to Reddit. I
still didn't think much of it and said sure, as long as he didn't give any personal information.

Within a few days, Joey’s picture went viral and received over a million likes on Facebook. People from all over the world were commenting on how inspired they were by him for looking so brave after such a terrible surgery. Joey received a ton of attention, and we were able to spread awareness

of his heart defect and congenital heart defects in general. We were lucky
enough to appear on CNN, the Today Show, and Inside Edition, as well as various
newspapers (including our local paper, The Lowell Sun) and websites. It was
incredible to see all of the support that Joey received, and it was amazing to
be able to spread awareness of heart defects. Until Joey, I had always assumed
that old people were the ones who had heart problems. It never occurred to me
that people could be born with them for no reason. It felt great to be able to
make this known.

Since then, another 3 months have gone by. Things have died down quite a bit,
and Joey has been able to recover from his surgery nicely. He has been acting
like a regular 6-month-old boy, playing in his exersaucer, listening to music,
watching sports, being read to, attending playgroups. He is such an awesome kid
and is always smiling and laughing. We are so lucky that he is ours!

During these past few months, Joey has had several follow up appointments and
check-ups. At his most recent cardiology appointment, they did another
echocardiogram, where they found out that his pressure gradient had increased to
42%. This was somewhat disappointing news, as it means that Joey will probably
have to have 1 more surgery in the near future to widen the pulmonary artery
once more. However, after this next surgery, he should be completely fixed for
good. As strange as it sounds, I am hoping that this next surgery will be soon
because it is the waiting around that is the hardest. Joey has a sedated
echocardiogram scheduled at Boston Children’s Hospital this coming Tuesday,
February 5, 2013, and this is where we will hopefully be able to figure out if
and when his next surgery will be. In the meantime, we are excepting thoughts
and prayers, and we are continuing to love Joey with every ounce of love that
there is in the world. We are excited for him to grow up and engage in typical
age-appropriate activities, and we are even more proud to someday be able to
explain to him what an amazing person he is and what a large role he played in
spreading awareness for heart defects.

It has been a long road, and it still isn’t over, but Joey is so worth it. Joe
and I are proud to be his parents, and we are happy to share his story.
We have set up a Facebook page for Joey’s supporters called Joey Hearts You,
where people can receive updates about Joey’s life and progress. We are also
selling TOF Awareness bracelets, which can be found on the website we set up for

Joe and I continue to be appreciative of everyone’s thoughts and support as we
get through this journey, and we want to thank everyone very much. I also want
to thank you for reading our story!


Anonymous said...

Love you guys! Great post, Sarah. I feel blessed to have followed his amazing story. Love, Nicole

Anonymous said...

What an inspiring little boy. He certainly is here to do big things;) all the best with the next surgery! -kristen

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