Julie Raskin recalls her son's birth and strange variation of nursing and sleep of the first two days of his life.

When Julie’s son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin that leads to severe hypoglycemia, she and her husband were determined to give Ben the best possible life. In 2005, Julie joined a dedicated group of parents whose children were also affected by the condition to found Congenital Hyperinsulinism International (CHI). The mission of CHI is to improve the lives of babies born with HI all over the world.

Julie is the Chief Executive Officer of CHI, headquartered in Glen Ridge, New Jersey. Under Julie’s leadership, CHI has created an active worldwide community of patients, their families and caregivers, expert clinicians and researchers, and professionals in the biotech field – to fulfil CHI’s mission to find better treatments, prevent death and brain damage, and support HI families every step of the way. 

Transcript

I was nine months pregnant. It was a gray Saturday morning in June when I realized I didn't have a newborn hat for my son. So, I scooped up my two‑year‑old daughter Hannah and said, “We're going to the mall.”

We went to Willowbrook Mall and she found this super cute hat that had little colored stars on it. We were getting it for Ben, checking out, when I went into labor. I started to have contractions.

Okay, I didn't want to get to the hospital too early because with Hannah I had, and then she had to be induced. So, we got home, we had lunch with my husband, Mark, and we let the afternoon just roll by. Then Mark and I got in the car in the evening and drove to New York City where Ben would be born.

In the Lincoln Tunnel, I started to have doubts that we'd ever get through, but we did. We made it and Ben was born in New York. He had natural childbirth. I was so proud. At the time I thought, “Oh, wow, I'm a great mother.” Well, that didn't last.

So, he was born and the first thought I had when I saw him was something was off. One eye was open and one eye was closed. “Well, that means absolutely nothing.” The doctor and the nurses said, "No, no, no. Don't worry. He's fine.”

His Apgars were fine. Mark was so excited because he was calm. “He's calm, Julie. He's different from Hannah.”

“Okay.” I was postpartum, but he did seem like a cute, sweet, perfect baby.

Then we went up to the newborn nursery. It was a big room with about seven different mothers all in the same room with their babies. I nursed Ben and he latched right on. I was really glad about that. Then I tried for him to have a little nap and I pulled him away from the breast and he started to cry.

Babies cry. But then this continued and he wouldn't rest. I brought him back to the breast and he. just kept incessantly wanting to nurse. I looked around at the other mothers and their babies and this wasn't happening. There wasn't incessant crying. There was nice time spent with the breast or the bottle and then there were naps. We weren't having the naps. This whole night was like that.

Ben was born at 11:00, so we just went through that whole first night and early morning with no break at all. And in the morning, I was exhausted. I was embarrassed. I felt like I couldn't satisfy my son.

Then I noticed that the other mothers, everything was still fine with those other babies and mothers and Ben was different.

Then my mother‑in‑law came to visit with Mark and they brought Hannah. Hannah jumped into bed. She didn't care about the crying. She was just so delighted to see this cute little baby. She didn't care that he was hysterical, but my mother‑in‑law did. She wanted to know what was wrong and demanded that we try and get attention for Ben, but we didn't because we were defending him. He was our son and this was my mother‑in‑law fighting with me, so I wasn't going to agree with her. But then they left and of course I agreed with her in my heart of hearts.

My OB‑GYN came by and she was a lovely person in addition to being a great doctor. I told her how I was feeling, what I was worried about with Ben. She picked him up and said, “This is a perfectly normal baby.” She was able to calm him down and quiet him. She gave him to me and I had a feeling of relief, but that lasted like 10 seconds. She left and he started crying again.

And so we went through the rest of the day the same way. Then it was night and, somehow, I drifted to sleep the second night.

I woke up at about 9:00 in the morning the next day and hours and hours have gone by. At first, I was so relieved I'd gotten some rest. Ben had gotten some rest and I was thrilled about that, until I looked at the time. It was 9:00 in the morning, so hours had gone by, maybe 12 hours, which just seemed insane. No baby sleeps through the night the second night of life.

Again, I was worried. This very strange rhythm. The day before, he had just been crying incessantly and then, on this day, he's just so fatigued. It made no sense.

I asked a nurse about it. She said, "No, it's just a normal variation." It didn't seem normal to me.

And as we were going through the discharge, Mark came back to bring Ben and me home. I had a pit in my stomach. I had this worry, this fear that something was terribly wrong.

As we drove home, it didn't disappear, that feeling. It continued. Ben was still so lethargic on the way home. We got to our house in New Jersey and there was Hannah and my mother‑in‑law to greet us.

They were so happy. We were home. Hannah, her newborn baby was home. My mother‑in‑law was really happy to see him sleeping and they had a cake. They had a beautiful chocolate cake from a bakery and it said, "Welcome home, Ben."

And that bit of sweetness was a tiny bridge of happiness before I got back to this feeling of worry that did lead me to get medical care for Ben.

We found out a week later what was going on, that Ben had been born with a rare disease, congenital hyperinsulinism. It causes the overproduction of insulin, which causes severe hypoglycemia or low blood sugar.

So, thinking back to those symptoms early on, Ben had been starving. He needed so much more sugar than what was in breast milk. That is why he was crying incessantly. And he was crying to save his brain from damage, which, in fact, did occur. Ben did have damage to his brain that caused low vision and epilepsy and learning disabilities and fine motor issues. This all occurred in those first few days of life.

These were all preventable had Ben been connected to an IV at birth, had Ben's signs of hypoglycemia been noticed, or had there been a screening program that would just show through tests that Ben had this severe hypoglycemia. But that wasn't the case, because there weren't those kinds of protocols.

At the time, I felt very, very guilty, because if I had only stood up for what I believed in, which I had done so many other times in life, but this was the first time it really, really mattered in my own life, where the consequences were so big of not standing up for what was on my mind.

But in retrospect, I was a postpartum mom and it wasn't my responsibility. to fight against the whole healthcare system. We need a system that will be in place to screen for these babies so these babies don't have to have preventable neurologic damage.