I could not stop crying. I just remember laying there, staring at the ceiling, focusing on the pattern of the tiles and holding my husband’s hand.
Moments earlier when we found out that we were having a boy there was excitement, Jeremy’s camera was rolling as we made jokes about how disappointed our niece would be not to have a girl cousin. The ultrasound technician chatted with us as he pointed out the different organs and limbs of our developing child, but when he zoomed in on the heart, suddenly he got very quiet. I remember knowing something was wrong, but I tried to keep the mood light by continuing to talk with Jeremy and even when the UT excused himself to get a specialist I kept telling myself that everything was going to be okay.
When Dr. Asrat came in he told us that he was going to take a look at our baby and that he was going to be quiet for a while but that he would talk to us as soon as he was done. In the seemingly interminably silent minutes that followed, I saw a picture in my head of the perfect little baby I thought I was going to have and I knew that dream of normalcy was slipping away. I tried to imagine what was wrong with him, did he have Down’s or some other genetic defect? I didn’t want a baby like that. I didn’t want my life to change. I didn’t want to struggle.
Finally the lights came on, the doctor stepped out to take a phone call, and the UT handed me a towel. I wanted to scream. What was wrong? What did you see in the pulsing black and white mess of my ultrasound that was so serious?
When the doctor came back in he had a yellow pad of paper with him. He drew a rudimentary picture of a normal heart and then he told us that our baby’s left atrium and left ventricle hadn’t formed correctly and he spelled out hypoplastic left heart syndrome on the page. Then he said that most parents don’t continue with the pregnancy. He told us that it wasn’t anything that we had done and that we were young and could try again. Then he gave us a moment alone. Jeremy and I sobbed and held each other in that little room, mourning the loss of our son.
In the weeks that followed I thought a lot about whether or not to continue with my pregnancy. Very selfishly I told myself that I would get my body back and that I wouldn’t have to deal with such an overwhelming life. If my baby lived he would have three open-heart surgeries, one within days of his birth. I talked to doctors and mothers of children with the same congenital heart defect. I talked to my family and my husband, but I still didn’t know what to do. That’s when I started writing to Graham:
“I’m scared for you little boy. The more I read about what lies ahead, the more overwhelmed I get. I know you won’t know any differently and that you’ve probably been prepared for this somehow, but I don’t know how I’ll do. I imagine sitting next to you in the ICU, rubbing your face, your arm, your leg, but I feel separate from the me in that vision. It seems so foreign to me to have someone who feels like a child of 25 trying to care for an infant with such a tough and dangerous road ahead of him…
I don’t mean to make you feel bad, but when I imagined being a mom it was to a perfectly healthy child and even that was hard for me to commit to. When I say I am scared for you it’s more that I’m scared for myself, scared about my ability to handle sacrificing everything to take care of you. I love you so much already and I can’t wait to really feel you move inside of me, but I’m also scared that the more ‘real’ you become the harder it will be to accept that I may have to say goodbye to you so much sooner than I thought. Right now I am pumping your blood and you’re safe but once you’re born I can’t protect you anymore and I don’t like the thought of that, but I want to meet you and hold you and kiss your little face more than anything in this world, even if it’s just for a little while.”
“Your Daddy loves you so much – he loves to feel you move and kick, it makes him so happy. I love to feel you move too – it let’s me know that everything is ok – it’s almost like you’re reminding me how strong you are.”
“I hate all the uncertainty and I’m sick of not knowing what is going to happen to you and me. I often imagine myself without a child, it’s very hard for me to picture our lives together – I hate that. Maybe that’s normal for first-time parents, but I guess I’m just trying to prepare myself for the worst-case scenario – we come home from the hospital empty-handed. “
“I’m so afraid to meet you. I’m so scared of the connection I’m going to have with you. If you don’t make it, will it destroy me? Will I be worried about you every second that I’m not with you? Will you feel connected to me even if I can’t hold you and feed you? What is going to happen to you little boy?”
We saw a lot of doctors, we had a lot of ultrasounds and we got more bad news. In addition to having HLHS, our son, Graham, also had a restricted or intact atrial septum, which can cause the lungs to develop poorly, sometimes so much so that surgery is not recommended. But the doctors developed a plan of action. I would have a scheduled C-section so that as soon as Graham was born he could be rushed to the cath lab where a stent would be inserted to open up his atrial septum. My due date was October 19, but my surgery was scheduled for October 10.
I woke up around 4:30 am on October 10 to go to the bathroom and I never got back to bed. I wrote a journal entry to Graham and then I got ready to go to the hospital. We left around 6:50 am. Somehow I was calm and ready to see how it all played out. After signing a consent for the cath procedures that would welcome Graham into mortality, we went up to Labor and Delivery, I changed into a gown, got an IV and proceeded to get more and more uncomfortable. I was so tired and so hot. I just wanted to go home and go to sleep. I thought to myself, “Graham doesn’t need to come out today or ever, he can just stay inside me and my heart can keep doing all the work for his.” Just as I was about to rip out my IV and run out of the hospital, my nurse told me it was time and she started wheeling me into the operating room.
There were about 40 people in the room with us. They were chatting, making jokes and talking about which Pandora station to listen to during the surgery. I was lying on a table, numb from the ribcage down, shaking uncontrollably. I had done my research and I knew what was going on behind the thin sheet of plastic blocking my view. I could feel the pressure of the OBs forcefully pushing my uterus out of my body and the empty space it left once it was removed, but I wasn’t prepared for a gurgling sound followed by suction and then a little cry and the surge of energy as an entire room of medical professionals sprang into action, trying to save the life of the little creature who made that strange sound. I saw Graham briefly as the cath team ran him out the door. They lifted him up as they rushed him away. I didn’t know until much later how serious the situation was. The doctors told us that they were terrified that Graham’s heart would stop before they got him to the cath lab. They were in such a rush to start and Graham’s veins were so tiny that they got some air in his IV, a little bubble went careening towards his heart, he went into cardiac arrest and was given chest compressions for two minutes, during which time he also had a stroke.
But I was completely unaware of the fight that my minutes old baby was engaged in. I was still in the OR getting sewn up. I remember being very impatient and just wanting the whole C-section debacle to be over with. I honestly wasn’t thinking a lot about Graham. He was gone. At the literal moment that I thought I couldn’t take it anymore, they told me I was done and they wheeled me into the recovery area where I saw my parents and my in-laws, I called my sister and my cousin and then went down to the maternity ward to wait.
I tried to sleep and chat with Jeremy and my parents to pass the time. Eventually the cath team came to give us a report and they told us that Graham was on his way to the Cardiovascular ICU and that we could go see him once they had spoken with the doctors and nurses there. Jeremy and our parents went up to see Graham as soon as they could but I had to get my vitals taken and prove that I could “dangle.” Finally, about four hours after giving birth, I stood up and got in a wheelchair.
Our parents kept us company as we rode the elevator and walked down hallway after hallway, but as soon as we got to the big double doors of 2 North, our parents fell back and Jeremy and I went in alone to see our little boy. I started to cry as soon as we crossed the threshold into the CVICU. Graham was in “the pod” – a large room within the CVICU reserved especially for babies. When the doors of the pod opened, I saw a little fuzzy head and before Jeremy said anything I knew it was Graham’s. I was afraid to touch him at first, but after I held his hand, and rubbed his head, I couldn’t stop. He was attached to a monitor and intubated, and there were tubes and IVs all over him, but there he was, my perfect little boy with half a heart.
This superhero baby is now 6 months old, recovering beautifully from his second open-heart surgery and a battle with RSV. Thank you for sharing your story, Maria.
