Baby Mikel weighs in at less than 10 lbs., but he has the HEART of a warrior

Just days after being born, Mikel Foster earned the title “the little miracle baby with the unique heart” by a group of medical professionals at St. Louis Children’s Hospital.

Born Nov. 17, 2018, at seven pounds, nine ounces and only three days early, mother Leighann Foster, of Ellsinore, said “everything was good and everything was fine.”

Hours before being released to go home with his family, a heart murmur was discovered and the last several months have been a blur ever since.

Mikel was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) with five different heart issues.

“The doctors said his heart was like a scrambled egg,” grandmother Shirley Drummond said.

No blood was being pumped from Mikel’s heart to his lungs during the pregnancy as well as the first few days of his life.

“He’s our blessing and God gave him to us for a reason,” Shirley said.

Cody Foster holds his son, Mikel, a couple weeks after heart surgery to complete portions of his heart. Submitted photo

The heart murmur was discovered by Dr. Kingsley Bost, before being released from Kneibert Clinic in Poplar Bluff. After running a few tests, Bost immediately called a team in for Mikel at St. Louis Children’s Hospital to prepare for surgery.

“If Dr. Bost hadn’t found it, they said he wouldn’t have made it to the next morning if sent home,” Shirley said.

Even once arriving in St. Louis, Leighann said she and Mikel’s father, Cody Foster, didn’t know just how bad their son’s heart was.

“We just thought maybe one thing was wrong, but when we got there five things were wrong,” Leighann said. “They said anything that could possibly go wrong with a heart, he got them all.”

When Leighann was told her son’s diagnosis, she simply said she didn’t understand. Doctors showed her photos of a “normal” heart, Mikel’s heart and what it would look like after surgery.

“When I first saw the pictures I think I was more shocked than anything,” she said. “Then I was full of questions like how did this happen and what did I do wrong.”

With no family history of heart issues, Leighann and Cody were told HLHS is something that “just happens” during the first eight weeks of pregnancy, while the heart is forming.

“That in itself is a miracle, that he made it through the rest of the gestational pregnancy,” Shirley said. “Then was born and showed no signs or stress until 24 hours later.”

A 3-D ultrasound during pregnancy would have given doctors a better chance at catching Mikel’s heart condition, Leighann said. If caught, arrangements could have been made for her to deliver in St. Louis and better prepare for his surgery.

Leighann was given two options for her son once hearing the issues Mikel faced; surgery or not.

Leighann Walker holds her son, Mikel, a couple weeks after heart surgery at St. Louis Children’s Hospital to complete portions of his heart which did not form and having a shunt placed. Submitted photo

“That was not an option, I told them to do everything they could to save my baby,” she said. “I was making a choice for him to live or not. I’m not God and I don’t know what the road is here, but I felt in my heart as a mom I would do everything to save him.”

At six days old, Mikel received his first surgery, called the Norwood. He was given a 65 percent chance of survival.

Cody and Leighann went and sat in the parking garage for hours and cried, they admitted.

“After getting through the initial shock of everything, it was that we were just going to have to be here for him,” Leighann said. “What happens, happens I guess is where we were at with it.”

Doctors made pieces of Mikel’s heart that were not complete and added a shunt to pump blood from his heart to lungs.

“He has part of his heart and part of like a mechanical heart,” Shirley said.

Following the surgery, baby Mikel’s chest was left open for three days because of swelling.

“We were worried sick during the surgery,” Cody said. “It was hard to see him coming out of surgery and how swollen his body was.”

About 18 machines were hooked to Mikel that would go off non-stop, his parents said.

“He’s a trooper though,” Cody said. “He has been strong through this whole thing.”

The parents then went into care mode for their son and became involved by asking more questions.

“We just stayed on top of learning everything with him,” Leighann said. “Of course I stay worried and stressed about what could happen.”

There is plenty for the family to learn as Mikel grows and medicines change at weekly doctor’s appointments.

While in the hospital, Cody and Leighann had to learn how to care for their son on their own without the help of medical staff.

After training on medicines, they were put in a room by themselves in an exercise called “Rooming In,” to give Mikel his shots, order medicines and more.

In the beginning, Leighann admits she was scared and stressed to take her baby home without the help of nurses.

“At first, some of the things that scared us, like when he pulls his tube out of his nose, are no big deal now,” Cody said.

Mikel was discharged from St. Louis Children’s Hospital Dec. 26, after 37 days. The family was home for a week when he was sent back after a “red flag” of blood in his stool. After another week stay, Mikel was sent home and returned two days later for a four-day stay.

“So far we are holding strong,” Leighann said after being home for a couple weeks.

Since being home for an extended amount of time, the family has found their “routine” with baby Mikel.

“It’s really not any different from a ‘normal’ baby now,” Leighann said. “But before, it was very hectic. Now we are on a routine and have a pretty good schedule.”

He is down to receiving medicines twice a day and a main issue facing Mikel at this time is high blood pressure.

“It was crazy,” Leighann said. “I had an alarm set every 30 minutes or hour going off for something.”

His heart rate, oxygen and weight must be checked twice a day and recorded as well.

“He’s gaining weight very slowly,” Cody said with Mikel now up to nine pounds, 10 ounces.

Baby Mikel’s parents and siblings gather around before his Norwood surgery at St. Louis Children’s Hospital, where doctors made half his heart like a mechanical heart. From left: Cody Foster, Cordale Walker, Leighann Walker, Alex Walker and Mariah Pinnell.

More surgery

He must reach 13 pounds before his Glenn surgery at four months old and is given 85 percent chance of survival.

The Glenn procedure redirects blood flow from the upper body to the lungs. The superior vena cava (SVC), which brings blood back from the upper part of the body, is disconnected from the heart and connected directly to the pulmonary artery. The shunt placed during the Norwood surgery will also be removed.

After the Glenn, Mikel will have a Fontan surgery at three years old. It should hold him until about 8-10 years old and then need a heart transplant.

“They can only do so much with surgeries as he’s growing, so he will have to have a heart transplant,” Leighann said.

With all the care Mikel requires, Leighann has not been working and Cody has been laid off from his job at least through March.

“We thought we were going to have a baby, come home, go back to work and pick up everyday life,” Leighann said. “It didn’t go that way at all.”

To help the family pay their bills, a GoFundMe Account has been set up under “Praying for Baby Mikel.”

Organizations, churches and individuals have also helped the family during this time. Friends have started fundraisers, including selling jewelry and T-shirts.

Christy Fowler has necklaces for $5 through Facebook or at Home Expressions in Poplar Bluff.

Terri Mannes has two necklace options available for $10 each or anchor earrings for $5.

Team Mikel T-shirts are also available from children’s sizes to large for $20 or XL and up for $25.

“That’s what’s paying the bills along with donations,” Shirley said. “If it wasn’t for all that, I don’t know what we would do.”

Support from family, friends, organizations, hospital staff and other families going through HLHS is what has helped the family stay strong for Mikel.

Even when the stress and long days hit, Shirley said Mikel continues to be a happy baby and smile through everything.

“You could be having a bad day and look at him and it makes it all better,” she said. “We were all in tears and sad and he’s the one going through it all and is just happy.”

Leighann said at this point, all she can do is focus on caring for her son and the rest will happen when it does.

“God has a purpose for our miracle baby and we will do anything we have to do,” Shirley said. “And we will get through it all together.”