Hydrocephalus. It was a word Alison and Patrick Johnson had never heard before, but it was one that would forever change their lives and that of their first child, Justice.
During a routine 18-week sonogram, Alison’s OBGYN noticed that her unborn son’s ventricles were twice the normal size for that stage of development. This is an indicator of hydrocephalus, an abnormal build-up of cerebrospinal fluid in the cavities (ventricles) deep within the brain. The pressure caused by the excess fluid can damage brain tissues and may impair brain function.
The Tyler, Texas couple immediately began researching hydrocephalus. They learned that the condition was rare, only one to two of every 1,000 babies are born with it.
Children with hydrocephalus face a range of challenges, including abnormally large heads, epilepsy, learning disabilities, problems with coordination, and vision issues. The condition could be fatal if left untreated.
Life-Changing Advice from Other Moms
Alison’s research led her to connect with other families on Facebook dealing with hydrocephalus. Several people told her about Cord Blood Registry (CBR).
“All these moms said to be sure to collect Justice’s newborn stem cells,” Alison recalls. “They shared stories of their child’s stem cell infusions and how the procedures had really helped. That’s when we first learned about storing stem cells and CBR.”
New Doctors in Dallas
With the hydrocephalus diagnosis now confirmed by a fetal MRI, Alison was referred to a maternal-fetal medicine specialist in Dallas.
“I started going to Dallas for weekly appointments and sonograms,” says Alison. “The scans clearly showed the increasing fluid buildup in his head. It was pretty traumatic.”
The Johnsons told their new OBGYN that they wanted to store Justice’s newborn stem cells from his cord blood.
A Rough Start and Then Hope
Justice was born via C-section in Dallas at thirty-five weeks. His delivery was early due to Alison’s severe high blood pressure.
“It’s kind of funny, we were in Dallas for our weekly sonogram and checkup.” Alison laughingly recalls. “Once the doctor saw my blood pressure numbers, she told us we need to deliver Justice today. The problem was, we had left our CBR box at home because we thought it was just going to be a routine visit.”
“We were super concerned about that.” Alison continues. “Luckily, the hospital had a CBR kit there that they always keep on hand in case of emergency.”
When he was born, Justice cried briefly and then was silent. He was put on oxygen and his care team scheduled brain surgery for the next day to place a shunt (a hollow tube) in his head to drain off fluid.
“He only had three millimeters of brain tissue on the inside of the skull,” Alison recalls. “Everything else was fluid.”
Despite the lack of brain tissue, later tests showed that there was nothing physically wrong with Justice from a cognitive standpoint. He faced many other issues, including cortical visual impairment, hypertonia, and rhombencephalosynapsis.
“He had a lot of deficits right off the bat,” Alison continues. “That’s where we felt that having Cord Blood Registry store his newborn cord blood might be beneficial. We wanted to schedule Justice’s stem cell infusion as soon as possible.”
Newborn Stem Cell Infusions Could Bring Big Changes
At six months, Justice received his first newborn stem cell infusion at Duke University Medical Center.
Before his treatment, Justice was an unusually quiet baby, one who rarely made a sound, showed no real personality, and was unable to make eye contact. That all quickly changed.
“We noticed pretty soon after that initial treatment that Justice started babbling, and that was just the beginning,” Alison remembers. “He said his first word about a month or so after his infusion. It was the beginning of him starting to actually talk.”
More progress was coming. Soon after the procedure Justice’s vision dramatically improved. For the first time, he was tracking movement and making eye contact. He also began to smile.
His second infusion at nine months began a new series of milestones. Justice started using more words and was sitting up independently by his first birthday. By 15 months, he started crawling.
A New Sister Helps Out Her Brother
The birth of Justice’s baby sister, Harper, brought joy and renewed hope to the Johnson family. Tests showed that Harper’s cord blood was a match for Justice. This created the opportunity for a third and possible fourth stem cell infusion.
“We really understood the value of cord blood,” says Patrick. “So, we stressed to our doctor the importance of collecting as much as possible. He was able to get every drop out of Harper’s cord.”
“Shortly after his third infusion – he was three and a half – Justice started walking independently,” Alison says. “Big advances followed within a couple weeks of each stem cell infusion. It happened every time.”
It’s been a remarkable journey for the now five-year-old Justice Johnson. There have been difficulties but mostly there have been incredible advances. While physical challenges remain, cognitively, Justice’s progress has been nothing short of incredible.
“Justice is really smart,” Alison says. “He tests above average academically. He can say the alphabet forward and backwards in English and Spanish. He knows a lot of words in Spanish, all his colors and numbers.”
“He’s a happy, sweet, joyful child who loves to learn,” Patrick says. “He really likes educational videos, especially ones that teach the phonics of different languages. We’ll walk by all the time, and he’ll be on his tablet listening to something in Russian or Japanese.”
Today Justice enjoys horseback riding and swimming; but he really likes anything having to do with music.
“When I play the piano Justice can tell me which note I hit without looking at it,” Alison says. “He has perfect pitch, and he can play a couple of short songs on the piano all by himself.”
After successfully completing a year of full-time pre-K, Justice begins mainstream, in-class kindergarten with an aide in September. Having overcome such incredible odds, there’s no telling how far he’ll go.
Expecting a child? Have friends or family who are expecting? Enroll with us today or log into your account for your unique referral code. When someone you refer preserves with CBR, you’ll get one year of free cord blood storage—and they’ll receive special pricing on our cord blood and cord tissue bundle.
ClinicalTrials.gov Identifier: NCT03327467