What is it like to hold a baby that seems impossibly tiny? One so small he could fit into the palms of your hands?

Yakia describes the feathery experience of cradling her beloved baby boy, D’Shay, weighing in at well under 2 pounds.

“It’s very different,” Yakia says. “He’s so light, you don’t even really feel him on you. You just have to know he’s there.”

Parents Yakia and Shakur call D’Shay their “miracle baby.” He has battled some tough odds since he was born prematurely in late January, at just 23 weeks gestation.

Nearly four months early.

Since his birth, this tiny boy has been cared for by a dedicated team of doctors, nurses and a full range of specialists in the neonatal intensive care unit (NICU) at Johns Hopkins All Children’s Hospital.

“I absolutely love my baby’s nurses,” Yakia says. “And the whole team of doctors, they’re amazing, always making sure they explain things in a way I can understand.”

Because premature infants have less time to develop in the womb, they’re vulnerable to a host of issues — from underdeveloped lungs to gastrointestinal problems to neurological complications to jaundice, to name a few.

D’Shay would have some challenges to overcome.

Soon after his birth, an echocardiogram would reveal another challenge. D’Shay had a potentially life-threatening congenital heart defect called patent ductus arteriosis (PDA). The ductus arteriosis is a blood vessel that is present in developing fetuses. It’s part of the circulatory system in the womb. In most infants, it closes within a day or two after birth.

But with premature infants, sometimes the ductus arteriosis does not close, causing too much blood to flow into the baby’s lungs. That can lead to big problems.

“The muscle in that duct isn’t developed enough to be responsive that early in fetal life, because these children would normally still be in the womb,” says pediatric interventional cardiologist James Thompson, M.D.

Some PDAs may be treated with medication therapy, or a surgical procedure where doctors make an incision through the side of the chest and go in and ligate (close off) the vessel. Sometimes with smaller PDAs, the choice is made not to intervene at all.

But clinically significant PDAs are linked to a range of poor outcomes including heart failure, increased lung disease, increased brain bleeds, increased gut disease, and increased mortality.

Big Decisions

What was the right treatment choice for D’Shay? Medication therapy did not work for him. Was there a way to close his PDA in a safe and less invasive way?

Thompson believed there was. For many years, he has performed a procedure on babies and children called transcatheter device closure of the PDA. With this proven procedure, a catheter is inserted into a blood vessel in the groin area, and a small plug-like device is threaded through a vein in the abdomen, up to the heart and inserted into the PDA to close it.

But this baby was exceptionally small — weighing just 720 grams (a little under 1.6 pounds) when his PDA was determined to be clinically significant.

“These veins are truly tiny,” Thompson says. “An adult’s femoral vein is about as wide as your thumb, but a premature infant’s femoral vein is not much bigger than dental floss.”

As the survival rate of extremely premature babies has continued to climb — science, medicine and technology have endeavored to accommodate. The FDA continues to approve medical devices benefiting smaller and smaller patients.

Thompson received training and was one of the early adopters of the transcatheter device closure procedure for the tiniest babies, performing it multiple times successfully before joining the Johns Hopkins All Children’s Heart Institute in 2020. He believed it to be the right choice for D’Shay. After examining all options, D’Shay’s care team concluded that this was the very best option for him.

Surgery Day

On the morning of D’Shay’s procedure, the catheterization lab is warm. Very warm.

Premature babies can struggle with body temperature, so the room is set at 82 degrees.

Thompson’s touch is delicate and precise. Fine motor skills are essential here, as he calls on his depth of experience to guide the catheter into a minuscule vein in the groin area, up through a vein in the abdomen and into the baby’s heart.

He carefully positions the catheter across the blood vessel and then deploys a tiny wire-mesh device, smaller than a pea, which opens like a little umbrella, closing off the vessel.

Baby D’Shay no longer has a PDA.

“Dr. Thompson called me to tell me D’Shay did great; he did awesome,” Yakia says. “I was so relieved. I knew it was going to help my baby with his breathing and so much more.”

It was a victory for the baby, but also for the entire medical team — an opportunity to help give the tiniest of neonates access to the newest medical advances and the very best chance to thrive.

“This was the culmination of a tremendous team effort,” Heart Institute co-director Michael Puchalski, M.D., says. “One that involved input and care by neonatologists, anesthesiologists, cardiologists, nurses, respiratory therapists and cath lab staff, as well as our simulation lab.”

Progress

Now, at just over 2 months old, baby D’Shay continues to make strides in the NICU.

There have been a few bumps in the road along his journey, as is often the case with premature babies.

But he has been breathing on his own for some time, and he continues to grow and progress, currently weighing in at 2 pounds, 11 ounces.

Meanwhile, D’Shay is developing his own personality, his own preferences.

He especially likes to have his feet played with. It makes him smile.

It makes mom smile too. Yakia is proud of her tiny boy’s progress and, now more hopeful than ever, for his future.
Each day, for D’Shay, a baby step closer to wellness.