WATCH: Youngest surviving premature twins continue to thrive after being delivered at 22 weeks

From TMX

CLEVELAND, Ohio (KLTV) - The youngest surviving premature twins are making strides after 138 days in NICU, and their care team shares stories for NICU Awareness Month.

Youngest Surviving Premature Twins Born at Cleveland Clinic Make Strides After 138 Days in NICU. September is NICU Awareness Month.

Ask Kimberly Thomas about her twins, and she’ll tell you they’re complete opposites when it comes to their personalities. Kimyah is independent, while DJ loves being held. However, resiliency is one of the traits they share.

“How did they manage to get through what they did? That’s what I think to myself every day,” said Thomas.

At 22 weeks, Kimyah and DJ Jackson became the youngest surviving premature twins born at Cleveland Clinic. Kimyah weighed 12 ounces, and DJ weighed 15 ounces. They spent more than four months in the neonatal intensive care unit (NICU) at Cleveland Clinic Hillcrest Hospital.

Looking back, Kimberly knew something was wrong when she started leaking amniotic fluid, which cushions and protects the fetus during development in the uterus. Kimberly promptly called her doctor, and she was ultimately taken to the hospital after it was discovered she was four centimeters dilated. At 22 weeks gestation, there was only a 10-20% chance the twins would survive, and developmental delays were possible and uncertain.

“We closely work with the families in these situations to come to a decision on whether they would like comfort care or full resuscitation efforts. Kimberly wanted us to do everything we could for her twins,” said Firas Saker, MD, the medical director of Cleveland Clinic Children’s Level III NICU at Hillcrest Hospital.

After Thomas delivered her twins, they both had to be resuscitated and intubated. They were quickly taken to the NICU. Thomas said it was hard to process just how small they were.

“I saw Kimyah for a split second before she was taken to the NICU, and I just remember thinking, ‘No, she’s too small. She’s too small,’” said Thomas. Kimyah was around the size of a soda can, and DJ was slightly larger.

The nurses recall the twins being able to fit in the palm of their hands and even the smallest diapers were too large for them. “These were the smallest babies I had ever seen, much less taken care of. I had to learn how to adapt to their size while caring for them. It was quite challenging,” said Sara Perrin, RN.

After her twins were born, Thomas spent nearly every single day and night with them in the NICU. Although she couldn’t hold them for a month because of how fragile their skin was, she worked with Kimyah and DJ’s care team to help in any way she could.

“Every morning I would get an update from the doctors on how they did overnight and what the plan for the day was,” said Thomas. “I would then go into the NICU just to talk to my babies. I don’t think there was one day I didn’t spend at least a few minutes with them. I pretty much lived at the NICU for four-and-a-half months.”

Saker said, “A patient’s family being part of their care is very important. It’s something we call family-centered care. Kimberly was very involved from the beginning. I think this played a role in improving Kimyah and DJ’s outcomes and helping them overcome their obstacles.”

While in the NICU, DJ had a lung collapse and Kimyah suffered from a minor brain bleed. Thomas compares the twins’ hospital stay to a rollercoaster with many ups and downs. However, she made sure to recognize their progress.

“We celebrated every milestone with them while they were in the hospital. At one month, my mom, uncle and some other family came together to throw a party for the twins at the hospital with a cake. We had their baby shower at three months, and we even did a photo shoot to mark their due date, which was Valentine’s Day,” said Thomas.

Kimyah and DJ spent their first Halloween, Thanksgiving, Christmas, New Year’s and Valentine’s Day in the NICU. After 138 days, they were ready to go home for the first time.

“I was super excited when I found out they were able to come home but a little nervous as well,” said Thomas. “They needed to remain on oxygen since their lungs were so underdeveloped when they were born. I also needed to continue checking their blood oxygen saturation levels with a pulse oximeter.”

On the day of their discharge, Kimyah and DJ’s care team, including Saker, Sara and Becky Stuart, RN, came together to hold a graduation ceremony where the twins donned pink and blue caps and gowns. As Kimberly and her family made their way out of the hospital, the halls were lined with cheering caregivers who had bonded with the twins over the months they were there.

Becky said, “It was a huge celebration. During their time in the NICU, I treated them as if they were my own children. I love them like I love my own girls and formed a bond with them that will stick with me forever.”

“So many of their doctors and nurses showed up. Even though this is their job, a lot of them built a connection with Kimyah and DJ. They saw them from their most critical stages to where they are now. This was their time to have with them before they left,” said Thomas.

Just under 1 year old, Dr. Saker said the twins are progressing well, catching up when it comes to their weight and height and developing their lungs. Although they remain on target with achieving their developmental milestones, it will still be a few years before they can tell if the twins will experience any developmental delays. In the meantime, they continue to be closely monitored and are exceeding expectations. They’ve shown growth and developed strength through their physical, occupational and speech therapy sessions.

“Along with medical advancements to care for premature babies, research shows centers that push the envelope consistently have more successful outcomes,” said Saker. “If you asked me 10 years ago, resuscitation at less than 24 weeks gestation would not have been possible without the advanced technology and skillset we have today. Now, there’s more tendency across the world to re-evaluate our thinking and push the envelope. We have a great team that’s been able to make a tremendous amount of progress.”

Now out of the NICU, Thomas simply enjoys being able to hold Kimyah and DJ whenever she wants. Thomas and their father, Damante Jackson, continue to celebrate each new milestone with them as they learn different motor skills.

“Kimyah and DJ are very active and love exploring. Thinking about everything they’ve been through, it was hard to imagine us ever getting to this point. It was unclear if they would be able to do anything by themselves. Now, they’re trying to do everything by themselves,” laughs Thomas.

“You have to stay positive and focus on the outcome you want.” Saker said. “It’s amazing to see the twins thriving. It serves as a reminder to all of us here why we do what we do every day.”

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