There’s nothing quite like knowing someone all their life to create a bond strong enough to see you through the toughest of times. Just ask CBR (Cells for Life’s sister company) parents Whitney and Ely.* Good friends since elementary school, they began dating while students at Virginia Tech and married a few years after graduation.
Settling down near where they grew up in Northern Virginia, Whitney and Ely started a family that soon included two, as their mom calls them, “typical All-American boys,” Jaxon and Dexter.
A weird, wonderful, and then worrying pregnancy
Just as COVID hit in early 2020, Whitney learned she was pregnant with her third child, a little girl they would name Lily. Whitney says, “The funny thing about being pregnant all through COVID was that most people didn’t know I was expecting. Gosh, were they ever surprised to suddenly see me pop up on social media with a beautiful brand-new baby.”
Whitney remembers everything being weird, but wonderful at first. “It was the healthiest pregnancy I had because I was home and had time to work out. Lily’s 20-week scan was great. A few weeks later, I went in for just a routine visit and the doctor said, well, you were measuring kind of small. So, we might as well do an ultrasound.”
The ultrasound revealed that the ventricles in Lily’s brain were twice the size that they should be. A follow-up ultrasound and fetal MRI at 32 weeks showed that Lily’s ventricles had grown from five millimeters to twenty, likely due to a severe, grade 3 brain bleed. The maternal fetal specialist made an in-utero diagnosis of hydrocephalus.
An early diagnosis offers time to prepare
Lily’s diagnosis put Whitney and Ely’s strength as parents to the test. They knew very little about hydrocephalus, a condition in which an excess build-up of fluid puts pressure on the brain. Children with this condition potentially face a range of challenges, including abnormally large heads, epilepsy, learning disabilities, problems with coordination, and vision issues.1 The condition can sometimes be life-threatening.
“It was scary and very upsetting,” Whitney recalls. “I just associated the condition with terrifying outcomes. The five weeks leading up to my C-section were the hardest part. You don’t know whether your child will be severely disabled or will be neurotypical. The range is enormous. You’ll just have to wait and see.”
The early diagnosis was actually a stroke of luck. A “born planner” according to her own mother, Whitney took the lead and quickly set to researching the condition to learn all that she could to help their daughter. It was on a Facebook group for parents of children with hydrocephalus that she learned that an experimental treatment with cord blood showed promise to help treat her baby.
“CBR Newborn Possibilities Program”
It was through the Facebook group that Whitney first learned about the CBR Newborn Possibilities Program, a program that has provided over 7,500 qualifying children2 with newborn stem cell preservation and storage at no cost to their families. At Cells for Life, we also provide participating families with cord blood preservation and storage at no cost through our Medical Need Program.
Due to the continuing pandemic shutdown, Whitney anticipated spending many days, if not weeks, on the phone and visiting doctors with the hope of being accepted into the Newborn Possibilities Program. She remembers being surprised by how quick, easy, and uncomplicated the process was.
After contacting our sister company CBR and informing a Newborn Stem Cell Educator about Lily’s prenatal diagnosis, a Clinical Specialist got in touch with Whitney to gather more information. They provided her with an application for the Newborn Possibilities Program. Whitney promptly completed the application and included the necessary medical information, which was signed by her physician. The Cord Blood Bank quickly approved the application, and within days, Whitney and Ely received Lily’s newborn stem cell collection kit, exactly how it happens at Cells for Life.
A beautiful baby facing a challenging future
Lily was delivered via a scheduled C-section at 37 weeks. Weighing six pounds even, she was a strong little girl right from the start ̶ crying, breathing on her own, and eager to latch. Encouraged by her condition, Lily’s neurosurgeon determined surgery was not immediately necessary and released her from the NICU after just ten days.
At seven weeks, Lily had a shunt put in to deal with the excess fluid. The procedure immediately helped reduce the cranial pressure on her optic nerve that was causing “sunset eyes” – a common phenomenon seen in children with hydrocephalus that limits the ability to gaze upward.
The impact of other brain bleed-related conditions on Lily’s wellbeing quickly began to mount, especially involving her vision. At three months, she had not reached her tracking milestones and her ophthalmologist grew concerned Lily may have cortical visual impairment, a disorder caused by damage to the parts of the brain that process vision.3 Lily also appeared to be slightly developmentally delayed in her gross motor skills due to cerebral palsy (CP) and left-side weakness.
“I want to do everything we can for her.”
Whitney and Ely were constantly thinking about every treatment they could provide for Lily in addition to her early intervention physical and occupational programs. “We wanted to make sure that she had every chance to reach her potential,” Whitney remembers thinking.
When Lily was eleven months old her parents began discussing using her cord blood in earnest. They were familiar with the progress some parents saw their children make after receiving an experimental cord blood infusion as part of Duke University School of Medicine’s Expanded Access Protocol.
While the cost of treatments was a concern, the family decided to move forward. Whitney remembers Ely saying, “I want to do everything we can for her. We can always make more money. We don’t want to look back and regret not using her cord blood.”
“It was such an amazing moment for us.”
The time leading up to Lily’s cord blood infusion was stressful. Fortunately, any concerns Whitney had about getting Lily’s cord blood sample released from the lab in Arizona to Duke University Hospital in North Carolina were quickly dispelled. “It was seamless. So wonderfully easy, so efficient. There were no problems along the way.”
Lily received her infusion when she was 14 months old. In the weeks and months that followed, the family says they began to see a difference in their daughter. She began clapping with an open left hand instead of a closed fist. Her gross motor skills improved rapidly. She began pulling herself up on the furniture, cruising the furniture and walking just after her second birthday. Whitney remembers, “It was such an amazing moment for us.”
When asked about the impact of Lily’s cord blood infusion, Whitney says, “We’ll never regret doing it. And if I had more, I would do it again because I believe it’s helped her.”
Her parents’ strength helps see Lily through
Two-year-old Lily is in preschool now and doing great according to her mom who believes anyone seeing her daughter today would be unaware of her past diagnoses of hydrocephalus, a brain hemorrhage, or CP.
Whitney reports, “Lily loves playing with her brothers, especially hide and seek and tag, but her favorite thing is talking with people, she likes to sit next to somebody with a little juice drink in her hand like it’s a coffee talk or teatime and ask them questions like, ‘What’s your mom’s name? What’s your favorite food?’ She’s the most outgoing, friendly little toddler.”
Whitney and Ely’s strength as parents, along with the support of our sister company CBR and medical interventions, have helped Lily make significant strides despite the early challenges she faced.
1. “Hydrocephalus Fact Sheet,” National Institute of Neurological Disorders and Stroke, April 2020, https://www.ninds.nih.gov/hydrocephalus-fact-sheet. 2. Internal data on file. 3. “Cerebral Visual Impairment (CVI),” National Eye Institute, https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/cerebral-visual-impairment-cvi.
*Family stories depict each family’s personal experiences and are not necessarily representative of others’ experiences and cannot predict outcomes for others. Cells for Life cannot and does not guarantee specific results. Your physician or other healthcare providers should be consulted about your particular situation.
**Refer-a-Friend Program: See website for referral terms and conditions.