Kaitlin Frederick had to say goodbye to a baby she never met, a baby she carried for 22 weeks, but never nursed. A baby who died, before it lived.
“I was feeling sick all the time but I was only 16 years old so I didn’t think anything of it,” said Frederick, now 20. “I didn’t know I was pregnant. I felt like I had the flu.”
She was 20 weeks along in 2015 when she learned she was pregnant with that child. Two weeks later, an ultrasound revealed unbearable news—the baby had died.
But the mystery remained. Why?
“We had no idea why she died,” Frederick said. “Her whole body was filled with fluid.”
Frederick mourned. She grieved. She wondered what might have been.
But life resumed and she returned to Ravenna High School to finish her education.
Last year, motherhood knocked on her door again. An early ultrasound showed a possible hole in a chamber of the baby’s heart.
Frederick sought care from Vivian Romero, MD, a Spectrum Health Medical Group maternal fetal medicine specialist.
“The baby had fluid around her heart and an overly large heart,” Frederick said. “She was very anemic, too. Her hemoglobin was super low.”
When Dr. Romero learned Frederick had lost a baby previously, red flags flared.
“No testing was performed when Kaitlin’s first baby died because the parents were devastated,” Dr. Romero said. “We were unable to explain why the baby died.”
Although she didn’t know why that baby had died, she did know she didn’t want it to happen again.
“When Kaitlin came to see us with this pregnancy, we were afraid that this baby could also die and started ordering multiple tests to find out the cause of Kaitlin’s baby being sick,” Dr. Romero said. “This baby was severely anemic, and we started doing intrauterine transfusions every two weeks, a total of six, with the hope that it will help the baby survive.”
A needle going through the umbilical cord delivered the blood transfusions.
The intervention may have saved Leslie’s life, but the mystery remained. Why was she anemic?
Dr. Romero dedicated her days and nights to research. She monitored Frederick and her unborn baby every day.
Frederick lived in fear of losing her child.
“During my pregnancy, I hardly did anything because I was so scared,” Frederick said. “Going through another loss would not be easy.”
When an MRI showed iron deposits on the baby’s liver and other body parts, Dr. Romero discussed the case with multiple maternal fetal medicine and pediatric specialists throughout the nation.
Initially, she suspected a rare condition called gestational alloimmune liver disease.
“In this disease the mother produces antibodies that cross the placenta and affect the fetal liver, causing liver injury and, if not treated, leading to the liver failure and the death of the baby either before or shortly after birth,” Dr. Romero said.
She has done a lot of research trying to find out if the cause is genetic.
“With the first baby, they thought it was random,” Dr. Romero said. “But when she came a second time with the same presentation, we knew it could not be random. It was something connected to the first baby, maybe genetic. Testing on the baby showed a genetic condition. I’ve been talking to our genetics team as well as hematology about her.”
Dr. Romero believes the intrauterine transfusions saved the baby’s life.
Baby Leslie entered the world on Feb. 19, five weeks early, weighing 4 pounds, 7 ounces.
“We definitely think those intrauterine transfusions made a difference and helped Leslie survive,” Dr. Romero said. “Leslie was born with some mild liver dysfunction, but she has been slowly improving.”
Little Leslie is fortunate to not have suffered liver failure, according to Dr. Romero.
“Most of these babies are born with liver failure and the majority die or need a liver transplant right away,” she said. “This baby has not required that, which is a good thing. She is now home with her mother. The baby will continue to follow up with pediatric GI (gastroenterology) and hematology in the future, but we hope this baby continues to thrive.”
Now 9 months old, Leslie is gaining weight and growing.
Deanna Mitchell, MD, a Helen DeVos Children’s Hospital hematologist-oncologist, recently confirmed a diagnosis—autosomal recessive, severe hereditary spherocytosis, a condition that affects red blood cells. People with this disorder typically experience a shortage of red blood cells.
“To this day, she gets transfusions weekly or every other week,” Frederick said. “She’s very yellow, very jaundiced. Other than that, she seems like a happy, normal, little baby.”
Leslie sports strawberry-blonde hair, hazel eyes and lots of smiles.
“She’s very happy,” Frederick said. “She likes bright colors. She likes TV. She likes to be talked to, for sure. She likes it when we go for walks.”
What Leslie doesn’t like is tummy time, Frederick surmises, because her liver is enlarged, which may make it uncomfortable.
Now armed with a diagnosis, Frederick looks forward to seeing what her daughter’s path has in store for them.
“It’s still a mystery,” she said. “I’m just thankful she’s alive.”