The moment that Samuel Haggerty was born is a bit of a blur to his parents, Katie and Jim Haggerty.
“I remember just asking over and over, ‘Is he okay? Is he breathing?’ ” Katie said.
Jim remembers Samuel coming out, having his mouth suctioned and then letting out a loud scream. Said Jim: “Someone said, ‘Dad, where’s the camera?’ I said, ‘For what?’ They said, ‘He’s fine.’ ”
This was not what anyone was expecting. Ultrasounds during Katie’s pregnancy had revealed that the bones in Samuel’s body weren’t growing as they should. The biggest fear was that his ribs would be too short to allow his lungs to work properly. Doctors had prepared the Haggertys for the very worst: a baby who might live but a few hours. But here, on Sept. 29, was a baby who — at first appearance, at least — looked pretty good.
The doctor in the neonatal intensive care unit at Virginia Hospital Center, who had been summoned for the potentially high-risk birth, said, “I don’t even know what I’m doing here,” then left.
Rather than go into the NICU, Samuel, after a typical two-day stay in the maternity ward, went home to Arlington with Katie and Jim.
Samuel isn’t out of the woods yet. In January, he’ll go to Children’s National to meet in person the doctors who were following him closely in utero for so many months. It wasn’t long after Katie’s first ultrasound, at 20 weeks, that the Haggerty’s were referred to Children’s and its Fetal and Transitional Medicine Institute.
“Fetal” means just what you’d expect: trying to diagnose conditions and, when possible, treat high-risk babies before they’re born. Imaging technologies — including ultrasound, fetal MRI and fetal echocardiogram — allow doctors to see what they’re dealing with.
“Transitional is exactly what we’re talking about in this case, not just caring for the fetus, but the child and the family later,” said Margaret Menzel, a Children’s National genetics counselor who works closely with the Haggertys.
Margaret and Children’s helped develop Samuel’s birth plan. They kept in touch with the NICU staff at Virginia Hospital Center. And they will see Samuel from now on as they zero in on a diagnosis.
“If their first visit to Children’s was a scary one, if they’d never been here before, it could be a totally different postnatal experience for them,” Margaret said. “I think that is our goal — that we have this continuity.”
Said Katie: “There was nobody who could really give us an answer to all the unknowns, but we found a few people at Children’s who walked through the process with us. That was the most comfort we had. We were grateful to have it.”
Next month, Samuel will visit Children’s for his first scans outside his mother’s womb. The supposition is that he has some sort of bone disorder. Genetic testing could pinpoint the problem, but first doctors must narrow down the possibilities. Genetic tests are expensive and very specific. And not every condition has been mapped yet.
“These cases are very difficult,” Margaret said. “They’re not all happy endings. But we try and do the best we can to at least make their families feel they have a community and physicians who are caring for them.”
Said Jim: “Does he have something? Is he going to have problems playing sports when he’s older? We don’t know. I guess it’s just wait and see.”
As Katie held a peacefully sleeping Samuel recently, she reflected on the roller-coaster experience of the past year: joy at getting pregnant, despair at learning that there was a problem.
“You’re supposed to learn a lesson from everything in life,” she said. “We still can’t figure out why we have been through this. I don’t know that we’ll know that answer ever, or for years to come, but, yes, it’s been a really wild ride.”
For now, they revel in the presence of a newborn in the house.
For nearly 70 years, readers of The Washington Post have supported Children’s National during our annual fundraising drive. I’m proud to carry on the tradition. You can help the hospital — and the children it treats — by making a contribution of any amount.
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washingtonpost or send a check (payable to “Children’s National”) to Washington Post Giving Campaign, c/o Children’s Hospital Foundation, 801 Roeder Rd., Suite 650, Silver Spring, Md. 20910. Our deadline is Jan. 10.
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Your gift today can make a difference in the life of a child.
For previous columns, visit washingtonpost.com/johnkelly.