By Jenny Neyman
Carter Moore’s toddler-sized glasses give his bright blue eyes a look of being permanently cast in wide-eyed surprise, an impression that’s reinforced by his near-constant curiosity and fearless exploration. It’s fitting, given the surprise he was to his family.
“He’s a double surprise. It was a surprise I got pregnant so quick, and a surprise he came so quick, too,” said Sonja Moore, of Soldotna.
Sonja and Rusty Moore’s older boys, Kade, nearly 8, and Cooper, who will turn 4 in August, were conceived through fertility treatments. Moore has had surgery for endometriosis and knew getting pregnant would be a challenge. They did get pregnant naturally once but lost the baby at about four months. Pregnancy with Kade went relatively well, although he had to have surgery at 4 months old for severe acid reflux. Moore lost another pregnancy after Kade, then Moore’s pregnancy and delivery with Cooper went completely smoothly.
With baby Cooper added to the family, life settled into a rhythm for the Moores, with Rusty working for Northern Technology Group and then Central Peninsula Hospital in information services, and Moore working as a nurse’s aide at the Peninsula Medical Center.
The Moores wanted another baby. Being fertility parents, they’d gotten used to thinking pregnancy would come when they were ready to pursue another round of treatments. Kade and Cooper were spaced four years apart, which seemed like a good schedule to continue, Moore said.
Working in part with Dr. Nels Anderson, who does fertility treatments as part of his medical practice, Moore knew nature still occasionally takes charge, even with parents who had previously needed to supplement nature with science.
“I knew working there that there could be cases where a mom couldn’t get pregnant for years and years and had to do fertility. Then the next thing you know they’re back in the office saying, ‘I’m not feeling good. I don’t know what’s wrong,’ and they’re pregnant. And they say, ‘I couldn’t be. I just paid several thousand dollars for my fertility baby, and now I’m pregnant?’ I just thought I wasn’t going to be one of those moms,” Moore said.
Moore was still breast-feeding Cooper when she started feeling sick. It’s only an old wives tale that breast-feeding prevents pregnancy. Still, an old wives tale with Moore’s history of not being able to get pregnant on her own had her thinking her nausea couldn’t be from pregnancy. Until her toothbrush gave her away, that is.
“It had been so long, we’d always had problems, plus I was breast-feeding. I thought, surely it wasn’t going to happen. But one of the telltale signs was I gagged on my toothbrush. One of my friends said, ‘Wasn’t the last time you gagged on a toothbrush when you were pregnant with Cooper?’ Sure enough, I was pregnant,” she said.
With Moore’s history of every other pregnancy having problems, she was nervous with Carter, but nothing in her early pregnancy gave her cause for concern.
“I never really got too sick with him, with any of them, really. The pregnancy at the beginning for most part went fairly well,” she said.
By summer, about 27 weeks along, Moore started having severe upper abdominal pain. She was diagnosed with gestational diabetes, which hadn’t happened with Kade or Cooper. The pain was something she hadn’t experienced before, either.
“I was doubled over downstairs sobbing. It was worse than childbirth so I knew something has to be wrong,” Moore said.
She spent a week in the hospital undergoing a barrage of tests, all of which were inconclusive. After she’d been home about two weeks, she started becoming very attuned to the baby’s movement — or lack thereof. He never moved much throughout the pregnancy, but he was particularly inactive by that point. Moore tried all the tricks that are usually recommended to get babies more active — take a warmer-than-usual shower, drink orange juice, lie down on your left side. None of it worked.
The next day, while housecleaning, Moore said she just suddenly knew something was very wrong.
“It honestly sounds funny but it was like the voice of God, like, ‘You need to go to the hospital now,’” Moore said. “Rusty was outside washing the car. All of a sudden I just kind of decided it was time. He didn’t argue about it one bit. He didn’t even finish washing the car.”
At the hospital, another round of tests commenced. Carter’s heartbeat was very hard to find, and far too low in her abdomen. Her abdomen had swollen, indicating Carter wasn’t processing amniotic fluid properly. Attempts to induce fetal activity for a stress test didn’t work.
Even after all that Moore said it was a biophysical profile — a special ultrasound — that finally made the severity of the situation sink in. The tech had started the scan with the screen angled a little toward Moore. During the exam, he turned the screen so she couldn’t see it. He left the room without saying anything. Two of Moore’s friends working in obstetrics were on duty at the time. One walked into Moore’s room crying.
“She was just sobbing and said, ‘I’m sorry, this is so unprofessional of me, but there’s something really wrong.’ He wasn’t breathing anymore,” Moore said.
Blood bank, March of Dimes to the rescue
Moore was airlifted to Providence Alaska Medical Center in Anchorage and Carter was delivered via an emergency Cesarean section. He was born at 8 p.m. Aug. 11, 2007 — 10 weeks early. He weighed 3 pounds, 11 ounces.
Doctors didn’t know how long he hadn’t been breathing or how extensive the damage would be to his heart, lungs and other organs. They realized Carter’s body had been rejecting his own blood — a condition known as feto-internal hemorrhage — forcing it out of his body through the umbilical cord back into Moore. That was the source of her intense abdominal pain.
Carter was on life support for 18 days, longer than even most preemies weighing a pound or two less than he did at birth. He had seven blood transfusions, eye surgery to protect against blindness and underwent a surfactant therapy treatment, which was developed by the March of Dimes, to help his lungs function properly. He stayed in the neonatal intensive care unit at Providence for two months.
The medical staff was wonderful and Carter started to rebound, Moore said, but doctors cautioned against being too optimistic.
“He had some major heart and lung issues for a while. He didn’t have good oxygen flow for who knows how long. It was kind of a rough road for him there for a while,” Moore said. “They did brain scans and he had some minor bleeding when he was born, which cleared up on its own. And he had some extra fluid between his brain and skull. That’s a sign there could be some developmental issues. They kind of gave us the worst-case scenario — he might have cerebral palsy or seizures. There are things that definitely can be long-term problems.”
At home, yet alone
Finally, the Moores were told they could take their son home.
“He was just over 5 pounds. He was still kind of a little squirt,” Moore said.
Though they were happy Carter was doing well enough to be released and come home to his big brothers, the transition was difficult. At the hospital, help and support were always available — from doctors, nurses and even the other parents who were at the hospital with sick kids.
“We came home and thought, ‘Oh, this is fabulous. We get to bring home our 2-month-old baby.’ He had been in this quiet environment with low lights, and all of a sudden he was overstimulated and cried a lot. I was upset I didn’t have all those people who’d been there for two months. It was hard for a while to adjust. It was a lot of work and all of sudden you don’t have all those people there to help,” Moore said.
Even though the Moores have family and friends in the area, a result of both she and Rusty living here since they were kids, returning home with Carter was an isolating experience. Having a young child with a serious medical or developmental issue can effectively shut families off from the rest of the community. The child often needs constant, specialized care. Leaving home can even be dangerous, with the risk of the child being exposed to germs or other hazards of an uncontrolled environment.
The situation results in a sort of underground club where membership is widespread, yet so secretive the members often don’t even know about each other. Families share a common experience of caring for a child facing serious medical and/or developmental challenges. At the same time, they share the feeling that they’re going through it alone, because they don’t know who else is out there.
“You think you’re the only person facing this,” Moore said. “Like, ‘Surely no one else’s kids do this or no one else feels like this,’ and of course they do.”
The isolation isn’t by choice. Moore said she’d love to see an active network of parents with sick or challenged kids that can support each other and share advice, observations and recourses. Parents could ask the questions that come up between visits to doctors and specialists, voice the nagging worries, share the triumphs and find supportive shoulders to help soften the burden of bad news.
It’s hard to tell how widespread the club is. There is no neonatal intensive care unit at Central Peninsula or South Peninsula hospitals, so children with serious medical conditions are sent to Anchorage or beyond for treatment. That, combined with the tendency for families to mostly stay home with the kids when they are out of the hospital, makes it difficult for the community to realize the plight and number of families in this situation, or for the families to know how not alone they are. Moore said she thinks there’s far more families in this group than most people would guess, judging by how many peninsula parents she met while at Providence with Carter, and by the existence of a kid-specific therapy business in Soldotna that’s busy with little clients.
The Moores were lucky to get pregnant with Carter and doubly lucky he survived. They feel even luckier that the good fortune has continued. Carter has challenges — he’s needed another eye surgery, has had some intestinal problems and a nasty bout of pneumonia, has foot braces to help him walk and attends occupational, speech and physical therapy to address developmental delays.
But all in all, Carter is a happy little boy, far healthier than he appeared he would be when he was born. His neurologist thinks he will likely outgrow his delays, Moore said. His glasses are about the only hint this 2.5-year-old has had such difficulty in those 2.5 years.
“If you saw this kid on the street, you would never know he had all these problems. He’s just so awesome,” Moore said. “Of course, I’m his mom, so I’m a little biased, but people who see him don’t even know a lot of the time. Even though he has a few little quirks, he’s a normal 2.5-year-old. He throws temper tantrums like they do and smiles and laughs like they do. He loves on his brothers and dog. He has his favorite toys. We’ve just been very fortunate.”
Moore said she loves telling Carter’s story, in part because it’s turned out so much happier than she feared it would when he was born. And also to let people know that babies like Carter are in this community and do need support. The Moores are the Kenai Peninsula spokesfamily for the March of Dimes. She and Rusty help Providence with its Miracle Network, and have recently been approved to be foster parents. Moore also organizes a blood drive for the Blood Bank of Alaska. This year’s drive will be June 23 at Central Peninsula Hospital.
“I think I’ve always kind of volunteered for something, even in high school. It’s just kind of who I am,” Moore said. “You know, when you’re personally touched by something, you kind of just realize the magnitude of it. It just makes you want to be active to help other people.”
By giving speeches, organizing blood drives and speaking out about Carter and her family’s experience, Moore hopes to raise awareness of special kids like Carter, and the special needs they have. But even if people aren’t moved to help the causes she’s adopted, she hopes they’ll find something to support.
“It’s a special thing to us, and I want it to be a special thing to other people, too. Everybody can find something to support in their life. Everybody’s affected by something. So you put a little bit of money or effort or whatever you have, it doesn’t have to be money. There’s so much people can do for just whatever cause. There are tons of organizations for tons of diseases. Give in the areas that mean something to them, because it does affect a lot of people. We’re thankful to people who donate blood so our son could have life, and the March of Dimes so they could do research and buy special machines that our babies need.
“We just want people to know these kiddos are out there and they’re special to us.”