Following infant loss, Alabamian hopes to move forward
Following infant loss, Alabamian hopes to move forward
By JEREMY WISE
Apr. 08, 2018
ENTERPRISE, Ala. (AP) — Kayleigh Hart belongs to a special group of people, and her induction to the group five years ago was something she never wanted.
"Nobody wants to be in this club of grieving parent. It's not supposed to work like that," the Enterprise woman said. "You're not supposed to bury your children. They're supposed to bury you. It's the worst club no one wants to be in."
Myles Allen Hart, born after just 27 weeks of gestation, lived only about five hours on May 15, 2013. It required major efforts to even get that far as Kayleigh fought a condition called PPROM (pre-term premature rupture of the membrane) — essentially the disappearance of amniotic fluid — for the last seven weeks.
Myles' short life — vicariously through Kayleigh and her family — may make a huge impact on many others. Influenced by the support she received during the last few weeks of pregnancy, Kayleigh has organized a drive to collect blankets, snacks and funds to support families who are staying at the University of Alabama-Birmingham Women's and Infant Center — a neonatal intensive care unit — and Birmingham's Ronald McDonald House.
Her goal is simple.
"It's taken me five years almost, but I finally feel like I'm ready just to pass on the love — just to let somebody else know I know you feel like you're alone in the world right now and I know you feel like the world is on your shoulders, but I'm praying for you," she said. "It's been a long five years, but I'm finally ready to put some good in front of the pain."
Myles is the first child born to Kayleigh and her husband Jonathan (a daughter named Ella Kate came later). At 18 weeks, the couple found out they were having a son — — a shock to Kayleigh since she swore for weeks she was having a girl.
The ultrasound revealed another surprise, though — a somewhat concerning one.
"The next day, the doctor's office called and said 'We noticed some things that aren't normal. We're going to send you to a specialist,'" Hart said. "Not quite two weeks later, I saw the specialist. (Myles) had a few spots on his heart and on his brain. The specialist looked at him and said, 'Yes, they are abnormal, but it doesn't cause concern other than us monitoring you more closely.'"
Assured that things would be fine, Hart embraced the impending opportunity to see her boy on ultrasound more often. Two days later, everything changed.
"At 20 weeks exactly, I woke up and felt different," she said. "I had to use the restroom and I laid back down, and I just felt different ... I can't explain it . mother's intuition thing."
The ladies at her workplace encouraged her to visit the doctor. Her obstetrician, Dr. James Pollard, had been called to Medical Center Enterprise for an emergency Caesarean section, so she waited.
While she waited, other medical personnel scheduled her for an ultrasound so Pollard could read it once he finished the surgery.
"Thinking back on it now, I should have known. The girl who did the ultrasound said she needs to go back in a room," Hart said. "Dr. Pollard came in and he said, 'When we did the ultrasound, your fluid was very low — almost gone. My water had broke that morning. Being a first-time mom, I said 'What does that mean?' because I was not in any pain, wasn't in labor."
What it meant was things were about to get extremely tense for the Harts. Without amniotic fluid, delivery at 20 weeks seemed imminent — which would have put Myles in an impossible situation.
"(Dr. Pollard) said 'We're gonna have to admit you to the hospital, and you're going to be in the hospital until you deliver this baby,'" Hart said. "He said you'll probably deliver in the next 48 hours. He said if you deliver a baby this tiny here in Enterprise, we don't even have tubes small enough to help him, to even try life-saving measures."
When delivery did not occur within the first two days, Pollard was encouraged that Kayleigh and Myles might fight through the situation. For the Harts, they set goals of getting through the next few weeks since UAB would admit her to its hospital at 24 weeks.
"(Pollard) actually got me admitted to UAB at 23 weeks, five days," she said. "Still being a first-time mom, I thought we would be OK. We made it to UAB. Everything's going to be gravy from here."
Life in UAB's neonatal intensive care unit proved to be tough in several ways. It was countless hours of waiting, innumerable IV drips and steroid shots to strengthen Myles' lungs — the main concern for PPROM babies — and hundreds of encounters with the same people in similar, dire situations.
"There's four pods, and everybody's assigned a color, so you kind of become family," Hart said.
Still, few things soothe the worry parents have when their children are in danger, although some people offered bright spots.
"I was in the hospital on Mother's Day, and it was horrible," she said. "I was still pregnant at the time, but I was alone. Jonathan had left to come back (to Enterprise) to work. I had a Sunday school class — and I think it was young kids — that sent me pictures on Mother's Day. They colored flowers. I put them all over the room because I had been staring at the same walls forever. Wow, somebody was thinking about me."
A couple of days later, Myles made his brief appearance in the world.
"On the morning of his birthday, I was 27 weeks, so at this point he had been seven weeks with no fluid. I woke up, and something is different," she said. "I'm hurting. (I) called the nurses, they came in and checked me — yes, you're in labor."
In the delivery room, every time Hart had a contraction, Myles' heart rate would bottom. Without amniotic fluid providing a buffer, every contraction collapsed the umbilical cord.
Doctors decided to take Myles with a C-section. At 10:55 a.m. on May 15, 2013, Myles Allen Hart was born.
"They held him up, and he was this long, lanky thing," Hart said. "He was longer than I expected. I was just expecting this tiny little (thing)."
Myles continued to show fight afterward — just like he had during the previous seven weeks. Any time nurses hooked monitors to him before birth, he kicked them off. Several checks of his heartbeat leading up to his birth revealed a strong rhythm.
Outside the womb, he breathed on his own. Hart saw Myles for a minute before they wheeled him to the NICU.
"I was like 'Oh, my gosh. Praise Jesus! He's alive. He was born alive. We're gonna beat this,'" Hart said.
After Myles went to NICU, Jonathan got to watch him while Kayleigh recovered. Medical personnel planned to send her up to see Myles after a few hours of rest and recuperation.
At about 3 p.m., things changed rapidly.
" They called and they said 'He's not doing good. We think he's dying. You probably need to get to the NICU,'" Hart said. "I'm in the hospital bed with IVs, and I start pulling IVs out and unbuckling stuff and I'm going to the NICU."
Unfortunately, the Harts had begun initiation into the undesirable group.
" We get up there, and his lung had collapsed," Kayleigh said. "They had put in a chest tube and everything else to try to re-inflate his lung, and by that time, it had put too much pressure on his heart, and his heart rate just bottomed out. He passed away.
"He fought, but it was just too much on his little ol' body."
Kayleigh never had the chance to hold Myles while he was alive. The feeling of grief overwhelmed her.
"Every parent's worst fear is that something will happen to their child, and every parent wants to do everything in the world possible for their child," she said. "In that situation, I was helpless. There was nothing I can do for him, nothing I can do to help him, nothing I could do to save him, and I would have given my last breath for him to live. But that wasn't our story."
As tough as the hours were that followed, the quick thinking of NICU nurse Angie Barganier during that time has provided the Harts treasured memories for the last five years.
"She cleaned him up and gave him a bath and put on a little gown for him and wrapped him up," Hart said. "She made pictures for us, and we've got big, beautiful pictures in the house of him. A lot of people whose babies pass away, they don't get that. It's just there's no one there to think that far ahead.
"I've got pictures of him with tubes and stuff, but I have big beautiful portraits of him with no tubes and no needles in him or anything — and I love it."
Barganier allowed the Harts to keep the blankets that touched Myles and the teddy bear that appeared in one of his photos. The items are stored in a keepsake box that Kayleigh reaches for at times.
"It's something tangible. When I get to having bad days, I just hold onto him," she said. "It's the closest thing I have to holding him. This is my comfort — as much as you can get."
Barganier's actions, and those like the church group that sent her Mother's Day cards, inspired the idea to return the favor to the UAB Women's and Infant Center and Birmingham's Ronald McDonald House, a place the Harts were destined to stay had Myles lived longer. In honor of his 5-year birthday, Kayleigh and her family are collecting several items to contribute to the NICU the Saturday before Mother's Day.
"I've talked to several other NICU moms and the director to . see some of the things that I could do that would help others," Hart said. "(The director) said they're always in need of blankets because they are constantly having to wash them and sterilize them. She said they take them and cover the isolates to keep the light out for the babies. She said they had to cover the beds and everything."
At any time, UAB's NICU has about 100 babies — so that inspired Hart's goal of collecting 100 blankets. Some will be crocheted, while others for micropreemie babies will be flannel due to sensitive skin concerns.
Hart understands the importance of the blankets.
"Some of the main things that we got are some of these blankets, and he was actually buried with another they gave us," she said. "These are so special to me — like if my house was on fire, these are the things I would grab because these touched him. They were his."
Elsewhere the UAB Women's and Infant Center has a community room with games and crafts, and Hart and her family want to leave bags of snacks there since vending machine trips can get expensive. Hart said those goodie bags will supplement some meals that area churches provide NICU parents from time to time.
Hart also plans on writing index cards with Bible verses or uplifting thoughts and placing them in bags for the parents in the NICU. The bags also will have some change, and the NICU director has agreed to pass those out at her discretion, Hart said.
"All I want from this is somebody to know somebody's thinking about (them) — somebody who's been through this — and (provide) something to make them smile because there's not much to smile about in the NICU most days," she said. "That's really my goal in this."
Hart and her family also plan to donate money to The Ronald McDonald House, which provides low-cost housing for those families facing long hospital stays. Hart said the average length of stay there is 15 days.
Hart encourages people who can't donate to just pray for the families in NICUs and those who have lost their newborns.
"Pray that God lets them know they're not alone. We still remember them, and (pray) for all the babies who have passed away," she said. "That's the worst thing as a parent who has lost a child is you're always afraid everyone's going to forget about your baby.
"I mention Myles all the time. I have two children. I have a boy and a girl. I may only have one in my arm, but I have two in my heart."
Information from: The Dothan Eagle, http://www.dothaneagle.com