Patients in the Spotlight: Doris Williams
Family thankful to celebrate milestones at home with micro-preemie
It was almost a week until Christmas when Keywona McPherson, just 23 weeks pregnant with twins, started having contractions and had to be admitted to Strong Memorial Hospital. First-time parents, and Rochester residents, Keywona and Derrick Williams didn’t know what to expect and just hoped for the best.
Weighing less than 1 pound, Derrick’A Williams was born on Dec. 16, 2013 at 4 a.m. Due to her extremely small size and fragile state, Derrick’A passed away after 30 minutes of life. Her sister, Doris, was breech inside of Keywona, causing complications for her delivery. It wasn’t until about three hours later that Doris entered the world, feet first. In shock and overwhelmed after losing their first daughter, the wait time between the babies felt like an eternity for the new parents.
“I was relieved to hear her cry and so excited to see her,” said Keywona.
Doris weighed 1 pound, 2 ounces – the size of her mother’s hand – and needed respiratory assistance from the beginning of her time in the delivery room. The insertion of the smallest breathing tube able to support life was difficult. It wasn’t until 30 minutes after Doris was born and transferred to UR Medicine’s Golisano Children’s Hospital’s Neonatal Intensive Care Unit that neonatologist Jeffrey Meyers, M.D., was able to secure Doris’ airway with the tiny tube.
Similar to most pre-term babies, Doris’ initial course was rocky with typical complications, including low blood pressure, need for respiratory support, infections, and trouble eating, the latter of which proved particularly challenging for Doris. Over her six months in the hospital, Doris would be switched from a naso-gastric (NG) tube – a tube that transfers nutrients through the nose, past the throat, and into the stomach – to a nasoduodenal (ND) tube - a tube that delivers food right to the small intestine – and back again. Doris’ medical team wanted to ensure that she was receiving the most nutrients in the most effective and efficient way.
Although Keywona and Derrick were still grieving and heartbroken over the loss of Derrick’A, they were resilient. Doris’ health and recovery became their main focus. Her continued fragility and inability to be held made it hard for Keywona to feel connected to her daughter, but she stayed by Doris’ side every step of the way.
“It is hard for parents to not be able to hold their babies and have that bonding time right away,” said Meyers. “We encourage parents in the NICU that being present and being at the baby’s bedside does make an incredible difference. During that time, they are observing and really becoming their child’s expert.”
At about 2 weeks old, Keywona was able to hold Doris for the first time. NICU social worker Chelsea Cordaro took many photos for the family to remember the happy occasion.
“Keywona was such a proud mom,” said Chelsea. “She had a constant smile.”
On Jan. 9, at less than 1 month old, Doris had surgery on the Patent Ductus Arteriosus (PDA) of her heart. In most cases, the vessel, which connects the organ’s pulmonary artery and aorta, closes within a day after birth, but with pre-term babies, like Doris, it has a higher tendency to stay open. The mixing of blood between the two vessels can lead to a variety of problems, particularly extra fluid on the lungs.
The surgery was extensive, especially for a baby of Doris’ size at less than 2 pounds. Pediatric Cardiothoracic Surgeon Francisco Javier Gensini, M.D., had to open her tiny chest, spread her ribs, and clip the blood vessel near her heart. Doris tolerated the procedure quite well and showed her resiliency with how quickly she recovered.
During their stay in the NICU, Keywona and Derrick were happy to be able to use the services of the Ronald McDonald House’s House within the Hospital.
“We ended up only needing to stay two nights, but the accommodations and staff were great,” said Keywona. “It was nice to be able to relax.”
Doris grew stronger and was taken off of the breathing tube in early February and all other respiratory support in March. In preparation for her discharge from the NICU on June 19, Doris was switched back to using an NG tube for feeding. Keywona and Derrick were trained on how to properly insert the tube and became experts quickly.
The NICU had become a home for the Williams and it was bittersweet when it came time to leave.
“We look forward to Doris’ follow up appointments and any time we have to visit her caregivers we make sure we drop in and say ‘hi,’” said Keywona.
Now 1 year old, Doris is nearly 15 pounds and loves to engage with the people around her. Being able to eat orally is improving, with her only having to use the NG tube at night. She also sees a speech therapist to work on swallowing and a gastrointestinal doctor to make sure food is digesting smoothly.
Doris and Derrick’A’s first birthday and the holiday season make December a bittersweet time for the family. It is an opportunity to celebrate Doris and how far she has come and a time to honor Derrick’A and her short time with her parents.
“This family has been through a lot of ups and downs and some very scary moments,” said Chelsea. “It will be nice for them to have time at home to reflect on the past year and look forward to their future with Doris.”
Chelsea, as well as many of Doris’ nurses, will be a part of celebrating her first year at her Winnie the Pooh-themed birthday party.
“It is important to us that they be a part of her birthday,” said Keywona. “They are a big part of our story and always will be.”