Two mothers, two sons fight diagnoses together
Mothers who graduated from same school have sons diagnosed with same rare condition
Friendship can be formed through a number of events, and some of the most long-lasting relationships are formed by people who need someone close by that understands exactly what the other is going through.
Shelby Sleeth and April Thomas grew up in Exeter and graduated from Exeter High School one year apart, in 2010 and 2011, respectively. Although they weren’t close friends in school, through an emotional turn of events, these two mothers found themselves in a position to reach out to one another.
Both of their sons were born just days apart in October 2015, and both boys were diagnosed with intestinal malrotation shortly after their birth.
“We had a few classes together,” Sleeth said. “I mean, it is a small town, but we didn’t really talk a whole lot in high school. We really didn’t start talking again until we realized both of our boys were sick.”
Sleeth said her son, Soren, was born on Oct. 22, and Thomas’ son, Gavin, was born on Oct. 19.
Thomas said Gavin was born in Monett, and Soren was born in Bentonville, Ark.
“April had reached out to me because we were still in the hospital when she had to bring Gavin back to the hospital,” Sleeth said. “She said to me that if I ever wanted to talk, because we were going through the same thing, she was always available.”
Sleeth said at that point, she didn’t even know that the boys had the same thing, just that both of the babies were in the hospital.
“I was hoping that Shelby and her son would be going to the same NICU that we were in,” Thomas said. “But, they didn’t.”
Thomas said Gavin was born, and she was able to have him in her arms for about five hours before the nurses wanted to take him for his bath.
“That is when the nurse noticed that he was breathing kind of funny,” she said. “She was checking his pulse and realized his heart rate was elevated and that his breathing was too.”
Thomas said she was told that Gavin was going to be kept in the nursery.
“He was there for 24 hours in an oxygen hood,” she said. “I couldn’t nurse him, so I had to start pumping, which was difficult.”
Thomas said the doctors sent out some lab work that came back with some kind of infection or something similar.
“But, after a couple of days, they said he was OK to go home,” she said. “He was completely acting normal, and his breathing was better, so we went home for two nights.”
Thomas said Gavin started to projectile vomit a green color.
“I didn’t really think anything of it,” she said. “I was thinking that I just have a baby that spits up a lot. My grandma happened to be here with me during the first few days, and she said she didn’t think it was normal.”
Thomas said she called the doctor and was told to bring him in immediately.
“We were at the emergency room for hours, and they ran some tests, but they didn’t find anything, so we went home,” she said. “The next day, we went to a check up, and I told her what was happening, and she sent us to Springfield.”
Thomas said when they got to Springfield, it wasn’t what they thought it was, and they kept him overnight.
“This whole time, he hasn’t been allowed to eat, and he was so hungry, and they tried and tried to get an IV in him because he was so dehydrated,” she said. “They had to put a PICC line in his head, which was the first time I cried.”
Thomas said after some more testing, they figured out that he had intestinal malrotation.
“They sent us by ambulance to St. Louis,” she said. “There was some miscommunication so they weren’t expecting us, but they immediately took him and started asking questions.”
Thomas said within an hour or two, he was prepped and in surgery.
“We knew he was in good hands, but I was crying the whole time,” she said. “He stayed 22 days in the NICU and couldn’t eat for a week or two. I filled up their freezer with breast milk, I had to take the milk home in two trips.”
Thomas said the breast milk did not go to waste because she ended up giving most of it to Shelby for Soren.
“He has been great ever since and hasn’t really had any issues since then,” she said. “He was really lucky.”
Sleeth said she had preeclampsia, so the doctors tried to induce her, but in the end, she had a C-section.
“He was born five weeks early, but they kept reassuring me that 35 weeks was a fine time to have a baby, and that he was just going to need a little help,” she said. “They call them feeder and grower, which is where they are in the NICU because the baby can’t eat enough on their own.”
Sleeth said he was doing really good with that.
“They don’t give you a date of when you will go home, but they try to give you a ballpark date,” she said. “About four weeks into him feeding and growing and doing really well, they told me we could do the carseat test, and we could go home the next day.”
Sleeth said Soren was supposed to go home on a Friday, and on that Thursday before, he stopped taking bottles.
“We had worked so hard to get him to eat the amount that he was,” she said. “We didn’t know what was going on.”
Sleeth said the nurses and doctors were trying to not be too worried but they knew something was wrong.
“He was fed every three hours on a strict schedule, so I would say it was the 3 a.m. and the 6 a.m. feeding that he didn’t want to eat,” she said. “By the 3 p.m. feeding his belly started to swell up really big. It was so swollen and hard and high that it was making his skin bruise up.”
Sleeth said they pushed her out of the room and the doctors were putting an IV in him and intubating him.
“I kept thinking, ‘What is happening? We were supposed to be going home,’” she said. “I was in denial. I said that they were overreacting because he was a baby. I think I was just so stressed out.”
Sleeth said after an X-ray, they saw that his intestines were swollen.
“They flew us to Arkansas Children’s Hospital,” she said. “I flew with Soren, and my husband, Jacob, drove behind.”
Sleeth said when they got there, it was the middle of the night again.
“I remember landing on the roof and coming down,” she said. “They put him in this room called pods. They let me stay with him until the surgeon got there, and then they took me into a private room.”
Sleeth said they told her she had a really sick little boy and they were going to operate.
“They said it was urgent, so they couldn’t wait for an operating room,” she said. “They did the surgery right there in the pod.”
Sleeth said they found that he had intentional malrotation and volvulus.
“A volvulus is a complication of malrotation where the intestine twist on themselves and everything inside the twisted part looses blood flow,” she said. “That doesn’t happen over time, and it had taken a while to diagnose, so they had to rescind two-thirds of his small intestine, which gave him another diagnosis of short bowl syndrome, or short gut.”
Sleeth said after that, he couldn’t eat for a while because he had to heal.
“We started at square one with a teaspoon,” she said. “After working for a month, we got him where he was before.”
Sleeth said Soren spent a total of 78 days in the NICU.
“Intestinal malrotation is symptomatic, so you can have it and never know it,” she said. “I would say this diagnosis affects one in 500 people, but to be symptomatic and need something done about it, it is about one in 6,000 people.
“I feel like I was lucky that I had April to ask questions to, because she went through it first. When Soren was coming home, we had trouble with weight gain, so April gave us a lot of her extra breast milk. I feel so indebted to her for that.”
Sleeth said they stayed in contact and developed a friendship, which extended to their boys having a friendship.
“We had been talking about doing a photo shoot with them for a long time, and we finally recently did it,” she said.
Thomas said she has a 6-year-old daughter, as well.
“It was so hard to be separated from my daughter while we were in the hospital,” she said. “I could not stop crying. I would see other people with their other children with them, and I felt like a crazy person because I would just cry so hard.”
Sleeth said there is nothing that can be said to a parent to make them feel better while they are in the NICU with their baby.
“You want to say that everything will be alright,” she said. “But, it may not be.”
Thomas said she could never come up with the right thing to say to Sleeth.
After nearly four years, both boys are doing well and growing. Thomas and her family live in northwest Arkansas, and Sleeth and her family live in Monett. The moms said they are extremely close now and talk every day, and there has not been more than a day or two that they haven’t been in contact.
“It is great to have someone that you are close to that went through something similar,” Sleeth said. “I know that I can call her and ask her anything.”
Sleeth said she is a photographer and now does free photo sessions for babies in the NICU.
“It has been hard to get the word out about that, but I want parents to have that option,” she said. “I will travel as far as Springfield and of course northwest Arkansas.”
Sleeth said she takes all kinds of photos and hosts all kinds of special photo sessions.
They would like parents to know what some of the warning signs are. A cardinal sign is green or bright yellow bilious vomit, but other signs include:
• Forceful/projectile vomit
• Inability to keep anything down
• Change in bowl pattern
• Abdominal distention
• Change in demeanor
• Signs of pain
• Excessive or inconsolable crying
• Electorate imbalance
• Signs of sepsis
They would like to warn parents to make sure their child is checked if they have any of these symptoms or more, even if they don’t think it is out of the ordinary.
People can find more information on intestinal malrotation people can visit www.intestinalmalrotation.com, and people can follow A Heart’s Wish Facebook page or www.aheartswish.com and contact Shelby for a photo shoot.