February is Heart Month
By Maggie Buttram
Mommy to Cole
Congenital Heart Defect
I remember every detail of what we thought would be our 19-week anatomy scan for our second child; it became a moment that is burned in my mind forever. My husband had to work, so I went alone, with my mom and oldest son in the waiting room. The ultrasound tech took an hour and a half and then sent to an exam room to wait and said the doctor would be in in about five minutes. I began to worry when 45 minutes went by.
The first words out of the doctor’s mouth were “something is wrong with your baby’s heart; he’s going to need multiple surgeries and a lengthy hospital stay.” I was frozen and in denial. She then went into detail. I broke down immediately after I finally realized how serious and complicated his future would be. Alone.
The nurse brought my mom and son in from the waiting room. I had the doctor explain it all to her because at that point I couldn’t breath, let alone speak.
During and emergency echocardiogram a few days later, our fear was confirmed. Our son, Cole, would be born with one of the most severe CHD diagnoses. The next few days were filled with fear and internet searching that should have never happened – no information we found looked promising of a normal life. I was up most of the night, and cried myself to sleep. I had lost all hope. The next day I discovered the CHD family community. They showed us story after story of success after a long road and it gave me hope. We wouldn’t have survived the next three years without them.
On Angels’ Wings came to us during this very difficult time. Michelle Renfro (who served as a volunteer photographer for the organization until her passing in 2020) referred me to the organization. Still to this day I think about her often and am beyond thankful for what she did for our family. OAW provided us with maternity pictures and then secured photographers on call for Cole’s delivery.
I had imagined the moment I would give birth to Cole for months. I dreaded delivery day, unlike other expecting moms. I wanted to keep him safe inside forever. I never wanted to let him go; as long as I carried him, he was safe – nothing could hurt him.
But that time came, nonetheless. On Angels’ Wings was there to capture Cole’s first moments, before the doctors swept him away.
A letter to my son about the day he was born:
The first few moments I see you, baby boy it’s like a high. You’re breathing. You’re pink. Your lungs sound amazing. Your cry is like music to my ears.
They lay you on my chest, I cherish these sweet moments. We don’t have long. What I don’t realize is this will be the only time for a year that you will lay in my arms without wires, tubes and monitors keeping you alive. The constant beeping letting me know your alive.
It’s just you, me and Daddy in those first moments; I block everything out. Right then, everything is perfect. But then, Daddy cuts the cord. I snap back. I look around and count at least 20 people now in the room – the team of different doctors, different specialists: Neonatologist, OB,Cardiologist, nurses.
They take you from me. Our precious time, the most important time for a mother and her baby, ripped away. Five minutes is all I got with you. Five whole minutes. We weren’t expecting that.
I watch as across the room the begin to hook up the wires, the lines, the tubes that will save your life. I watch from the bed unable to move, Daddy and Mimi walk with you and your team of doctors to the NICU. I sit alone and try not to cry as the nurses do their job.
Mimi comes back to comfort me. She didn’t know how much I needed her at that moment. She show me a video of you crying upstairs. And I’ve held it in too long; I break down. I so badly want to be with you. I push myself to recover from the epidural so I can get to you upstairs as fast as possible. It takes an hour, but we’re finally reunited. It’s the best feeling in the world.
After tests, Cole was diagnosed with a “full” congenital heart defect: DILV (Double inlet left ventricle) with severe hypoplastic right ventricle (HRHS). He actually had no right ventricle at all. He also had a hypoplastic aortic arch, with severe coarctation of the aorta, and left transposition of the great arteries (L-TGA), both of which result a large atrial septal defect (ASD) – a hole in the wall between the heart’s two upper chambers – and ventricular septal defect (VSD) – a hole in the wall between the two lower chambers (read about ASD and VSD).
The day we got his diagnosis our lives got flipped upside. We didn’t know that the normal month inpatient after his first surgery would quickly become almost a year. Our family split, me at the hospital with Cole, Daddy at home with his brother. I’d make trips to the hospital every day to spend it with Cole, just to get home each day right before bedtime to a confused big brother wondering why Mommy is never home. The next few years of constantly being admitted to the hospital (whether for surgery or a scary illness – something as simple as a cold – that put Cole at risk) tore us away from each other. We experienced a lot of trauma during those first few years – a lot of constant fear for our child. Even though he’s still here, we know that our lives have been drastically impacted.
OAW continued to provide us with pictures to capture Cole’s story. After his delivery, they did pictures for us again when he was six months old and still in the hospital, a celebration session when he came home, and then family pictures every year since along his journey, including pictures with Santa yearly, too. As a family of four with one income and two highly special needs children (our oldest son has ASD), we would never be able to afford the family pictures I desire without On Angels’ Wings providing them for us.
At age two, Cole received his forth open heart surgery, which was the final step in a series of three surgeries he had to have. It was done much earlier than normal because of multiple complications. Since then he has slowly improved – we’ve been able to slowly take away medications, remove his g-tube, and he’s slowly starting to eat on his own. We are now finally seeing him experience a sense of normalcy – of getting to be a regular kid.
Although Cole has completed the surgeries designed for complex CHD and single ventricles cases, the Fontan placed during the third surgery is not a fix. The Fontan was invented in the 60s and then perfected over 30 years before being used regular – which means the first Fontan patients are now in the 30s and 40s, hindering the medical community from knowing how a Fontan patient fairs over the long term – though there is an estimated 80% survival rate of 30 years.
However, there is no next step. The Fontan circulation cannot be maintained indefinitely, and all Fontan patients face the possibility of transplant at some point. And there is a risk of liver malfunction directly linked to Fontan circulation.
One of my greatest fears is I will outlive my child. When we received Cole’s diagnosis, every dream I’d ever had of our oldest having a little brother to play with came crashing down around me. Hearing that your child has a good chance they won’t make it to their first birthday, it crushes every ounce of your soul and spits you out. I cried for months. Would he play like a normal boy? Get dirty, run around, play tag? Would he even have a future for us to hope for? So many things were ripped away from him in those first years. So many firsts we missed.
Little did I know that this boy would inspire me, he would become my hero and will always be. He has shown strength and determination like no other human being I’ve met. He is without a doubt the strongest person I know. Cole made up for those lost years. He proved them all wrong time after time. All I can do when I picture his future is smile, because already this kid has moved mountains. At this young age, we already see enormous potential, with his incredible intelligence, a love for learning, and words beyond his years. He has a never-ending curiosity for this world. CHD is how his life began. He will not let it define his potential for greatness.
