What every NICU parent should know but often doesn't
The choice is yours when it comes to NICU care
When Stella Amechi found out she was pregnant with her third child, she was over the moon with excitement. She was already the mother to two young girls, and soon, her first son would be arriving.
Never in a million years did she dream that he would not be able to leave the hospital with her after he was born.
As an adult oncologist in Abilene, Dr. Amechi is accustomed to the ups and downs that go along with medicine. But she wasn’t prepared at her twentieth week of pregnancy when she learned that the amniotic fluid that was supposed to be surrounding her unborn son was missing.
“You never really expect to be in that situation,” said Dr. Amechi. “I just thought I was pregnant, I arranged my maternity leave and I was ready to have my baby.”
When Dr. Amechi’s son, Samuel, was born, he immediately began suffering from respiratory issues and needed to be intubated. On top of that, his kidneys were not able to fully develop due to the lack of amniotic fluid, leaving him in need of dialysis. He was admitted to the Neonatal Intensive Care Unit (NICU) at the hospital where Dr. Amechi gave birth. For two months, Dr. Amechi spent day after day by Samuel’s side. The hospital was three hours away from their home in West Texas, and with a steady round of complications, the Amechi family had little hope of Samuel being discharged anytime soon.
“When I realized we weren’t going to get out of the NICU before September, I started bawling,” said Dr. Amechi. “That’s when my nurse said that’s it, let’s look for other options.”
After talking with the medical staff at the hospital, Dr. Amechi and her family decided to transfer Samuel to the NICU at Cook Children’s Medical Center. While it wasn’t home, it was a little closer to home. The Amechi family now only had to drive two hours to Fort Worth instead of the three hours they’d grown accustom to. And for the first time, they could spend the night next to Samuel. Unlike many other NICUs in the U.S., Cook Children’s NICU has private rooms with couches that pull out into a bed. This means families don’t have to leave their child’s side if they don’t want to.
“Cook Children’s has a way of arranging things to make life a little easier for families, even small things like parking. It was nice to be able park and not worry about finding a spot or having to pay for the garage,” said Dr. Amechi.
She says there was also a common goal among the NICU staff at Cook Children’s to get her son home, something she didn’t necessarily feel was the case before the transfer.
“We have a diverse and caring group of specialized people who are taking care of these very sick infants,” said Jonathan Nedrelow, M.D., medical director of the NICU at Cook Children’s. “From our nursing staff, to pharmacy, respiratory therapists, physicians and advanced practice nurses, we are all focused on doing what is best for the patient and their family.”
After three months at Cook Children’s, Samuel was finally deemed healthy enough to go home for the very first time. He was discharged in early September and is enjoying life with his two big sisters.
“Being able to leave the hospital with my son was a blessing,” said Dr. Amechi. “I remember when I was first told that I couldn’t take him home and I felt like the floor was going to fall from under me. So even though I was scared, I couldn’t wait to take him home.”
Stories like Dr. Amechi’s are not uncommon. In fact, Cook Children’s sees more than 1,000 babies admitted to the NICU each year. But often, when parents learn their newborn is in need of specialized care, they don’t realize they have a choice as to where that care is facilitated.
“Parents should know that they have a say when it comes to the care of their child,” said Dr. Nedrelow. “They should also know that there are different levels of care available.”
The NICU at Cook Children’s has been designated as a Level IV NICU by the state of Texas, meaning it provides the highest standard of neonatal care. Dr. Nedrelow says parents interested in transferring to Cook Children’s should contact their insurance company first. Because every company is different, having written approval from your insurance company before the transfer is the best way to ensure the care will be covered by your policy.
“If you’re considering transferring your baby to another hospital, be sure to talk to your physician,” said Dr. Nedrelow. “Ultimately, it’s your decision on where your newborn is treated, but your physician makes the referral and remains part of the treatment process so it’s important to discuss the process with him or her.”
What should parents consider when choosing a NICU?
What medical condition are you suspecting you will need a NICU for? Will your baby need surgery? If so, consider a hospital that performs neonatal surgery or is located near a children’s hospital that provides surgical services. How important is privacy and does the NICU offer single rooms? Does your child need a high level of care? NICUs in Texas are currently being designated level I-IV with IV being the highest level of care available.
How can you “prepare” for a NICU baby?
Many times, having a child in the NICU is unexpected. If you have time to prepare, check with your insurance company to see which hospitals are covered and request a tour of the facility you plan to use.
What should you expect from hospital staff during a NICU stay?
Parents should expect to be treated like partners. They should be involved in their child’s care and have a voice in that care.
What should you do if you’re not satisfied with the care your child is receiving?
Parents can always request a second opinion or asked to be transferred. You will want to check with your insurance company before the transfer to make sure your new hospital is covered.
About Cook Children's Neonatal Intensive Care Unit
If you would like to schedule an appointment for a NICU tour, refer a patient or speak to our staff, please call our offices at 855-687-6428. You can also find more information on our website.