It was 2007. We waited to get an ultrasound because my husband and I just started new jobs and needed our insurance to kick in to go to the doctor. When I finally did, I was already five months along.
We were excited. Because of the pregnancy, we had reassessed our life and our relationship and decided that we should take that next step into marriage. With a pretty new ring on my finger, we went to the doctor together. Knowing I was so far along, my husband could find out the gender of the baby. I didn’t care.
The radiologist called my name. Nerves kicked in. I didn’t do this with my husband last time. This time, we were going in together. I felt good. I felt happy.
The radiologist seemed to take forever taking picture after picture. Then she had me move to the right. Then I had to move to the left. A weird look came over her face. Not quite a look of worry, but questioning one. The ultrasound was taking so long. I asked what the problem was.
She was blunt. “I can’t get a good picture of his heart.” What does that mean, I wondered. She continued, “It happens sometimes when the baby isn’t turned the right way. So, let me call the doctor real quick and I’ll be right back.”
My husband looked at me worried. He’s never worried. Or least doesn’t show it. I started to get concerned.
The radiologist returned and said that she is going to schedule an appointment in a couple of weeks, because the baby will grow and turn, and likely, she will be able to get that clear picture of the heart.
My husband and I felt better. We went home with a clear conscious, ready to return another day.
I returned a couple of weeks later. My husband had something at work, so he couldn’t take the time off to come with me. The radiologist took a bunch of pictures… but not nearly as many as last time. Her face fell. She said “I still can’t get a clear picture of the heart. I have to refer you to the high risk doctor. He’s been notified of the situation and you can see him soon. I’m sorry; I can’t tell you more right now.” She seemed to know the questions running through my head.
Because of the news, my husband made sure that he could attend that next appointment. I can’t even remember how far away it was from the first one. I just know I was a wreck. I was scared. Even the term “high risk” seemed scary. I had no idea what to expect.
When the appointment arrived, even it was a blur… I just remember being told that my son had hypoplastic left heart syndrome – a congenital heart defect that means that my son was only born with the right side of his heart of normal size. The left side (in easiest terms) was underdeveloped. He explained that there’s a good chance of survival in the womb. He didn’t have to work as hard, because my body was doing most of the work.
The numbers after birth were dismal. He would have approximately three surgeries – the first within a week of his birth; the second, around the time he turned seven; and third, around he turned fourteen. Although he could receive a heart transplant, hearts don’t grow at the same rate when transplanted, like say, the liver. At each surgery, the survival rate was 25%. The eldest children with HLHS (at the time) were in their late 20s – all of them female.
Needless to say, caring a child that you knew had a high likelihood of death is challenging. With a strong heart rate internally, you always feel strong, that this child will be one of the long term survivors. But we went along with our faith in God, that His will be done.
Besides extra testing, the rest of the pregnancy was a breeze. Alexander didn’t go home after birth. He was in the NeoNatal ICU for the first week, prior to having open heart surgery. He then spent the next four weeks in the hospital healing. I was on maternity leave, but my husband continued working. My older son Matthew, who’s now 9, but was 3 at the time stayed in the Ronald McDonald house.
Since we didn’t have any family help (they lived in Rancho/Fontana, but no offer of help), I had to stay at RMH during the day until my husband returned. I went to the hospital at night, and my husband went before he went to work. I breastfed him as much as I could, but pumped most of the time.
We were excited that we could finally take him home. He spent one week at home. We played, laughed and smiled. Then on the fourth day, he started refluxing his meds. Normal, kinda, so not much to think about. Then he slept through the night – at 6 weeks old. He slept 12 hours. I loved the idea, but something seemed off. Then his breathing got real shallow. The doctor told me to take him in. I did.
He was in a couple of days and all seemed good. All stats were increasing and/or steady. I went home to get some rest in bed when they said he could go home the next day. I needed a new change of clothes for him and me.
I came back the next day. I walked in the door. Said, “Hi, baby”, all his stats went to zero. No heart rate, no breaths, just buzzing came from all of the machines. The doctors and nurses rushed in, put a barrier up around him and ushered me and my mother in law to a private room. Where we waited. It seemed like an eternity. Someone came to check in with us every few minutes. With each person, I felt a glimmer of hope. There were times of revival, before he crashed again.
Until a half an hour later. His doctor came in. He said they could keep going, but after this long, even if there was a chance of survival, there would be extreme brain damage.
They stopped. They removed all the wires. The nurse ushered us into a room, where friends came and we sat with him for over three hours. Another nurse came in to offer to stamp hand prints and foot prints for me. I spent the entire time holding him.
It wasn’t until the nurse told us that he needed to get to the morgue to be processed if we were having an open casket that he would need to go that I even considered letting him go.