Stem Cell Transplant for Jael

Hi! We are Kiersten and Sean, blessed parents to twins, Jace and Jael. Jael has hydrocephalus. My husband, Sean and I are fundraising to provide our Baby Girl with a procedure to help alleviate the impact this condition may have on her throughout her life. 

After the initial shock and terror of having two babies sunk in, we were beyond excited to welcome our “Twinkies,” a baby boy, and a baby girl. Both had been perfectly healthy and well until the 28-week ultrasound, where doctors discovered Baby Girl, Jael, had a significant amount of cerebrospinal fluid not properly draining in the ventricles of her brain. It was not considered a mild or even a moderate case, but instead classified as severe due to the amount of fluid. This fluid was compressing her brain tissue, and this pressure was leading to brain damage. 

Hydrocephalus is a life-threatening condition that can be treated but has no cure. Those with the condition may suffer developmental, intellectual, or physical disabilities ranging anywhere from minor to serious. We had a fetal MRI and met with a neonatologist, neurosurgeon, neurologist, and genetics counselor. Based on her MRI, doctors were bleak. "She may walk, she may talk, she may see," and advised us to consider termination and the need for resuscitation at birth. However, we never considered anything other than providing the very best for our Baby Girl. 

Instead, we decided to be hopeful and have faith that this would not be her story. But at each appointment, the fluid levels kept increasing. Nothing could be done while inside the womb, especially considering her twin brother, Jace. But, we knew we would be doing everything in our power for her once she made her arrival. We leaned on each other and our families and friends. We stopped comparing the babies' sizes to fruit and took a crash course on hydrocephalus, hoping to have at least 10 more weeks before the Twinkies arrival. We needed time to learn, research and plan. In a support group we had heard about stem cell therapy being offered to new borns with hydrocephalus who qualify but knew this was not something we could afford and looked for other options. Very limited in treatment options for hydro, we decided on the type of brain surgery our daughter would have when she was born. Our only options included a shunt system that may or may not give her a lifetime of complications or a procedure with such a low success rate in infants she would more than likely require another surgery to place the shunt in anyway. We were advised the babies should be delivered earlier than anticipated via c-section as Jael's head size was too big to deliver vaginally and not to cause her unnecessary stress. We also planned to deliver at the children’s hospital as intervention and NICU time was expected. 

Two weeks before our scheduled c-section, we decided we weren’t doing enough for Jael. We didn’t care if we had to take out a loan, pay credit card interest or work tirelessly, but Jael was going to get our very best and that included this procedure! Five days before their arrival, we registered with the stem cell bank. Two days prior to Kiersten’s water breaking the collection kits arrived. We harvested both babies' cord blood upon their delivery and stored them in the stem cell bank in hopes of using them to repair those damaged cells in the future. 

At three days old, an MRI determined Jael had suffered a stroke in utero that caused a blockage, thus leading to hydrocephalus and finally giving us an answer to what caused this. At one week old, she underwent brain surgery, placing a shunt system in her brain to re-route and drain the cerebrospinal fluid through her abdominal cavity. After a week and a half in the NICU, Jael was discharged home.

 Jael has defied the doctors in every way, hitting and exceeding every milestone thus far. She is a happy baby who loves peek-a-boo and playing with her brother, Jace. She loves music; dancing, clapping, and bouncing to the beat, especially to her daddy’s songs. She loves books and a big smile draws upon her face as she listens. And she LOVES her daddy, as everything stops, and no one else matters when he enters the room! 

 Jael is followed closely by several specialists and has had several scans in her short life. Her latest scans showed that despite her tremendous achievements, her brain tissue is "flatter" than it should be and has left her with areas of empty space. And although the excess fluid continues to drain steadily, some compression still exists due to this extra fluid. 

Hydrocephalus is a lifelong condition that Jael will have to monitor and consider for the rest of her life, but we won't let hydro consume it. We have been preparing for Jael to undergo a stem cell transplant, a procedure offered to those who qualify. We are in the final steps of this process. This is an out-of-pocket procedure that insurance will not cover and will cost approximately $30,000. The procedure will utilize the stem cells collected at birth with the hopes that they will regenerate the damaged brain tissue. This is not a cure, but we hope it will help alleviate some difficulties she may experience in the future. 

“If she is doing so well, why not wait?”Well because, this procedure is time sensitive. Only so many stem cells could be harvested at birth, and it’s effectiveness is weight dependent. Additionally, the brain develops most rapidly until age three; therefore, now is the best time to help it recover. 

We'd like to ask for help with the other $10,000 to help cover some of the medical expenses accumulated thus far and expected travel expenses as we travel. 

 We wish to give Jael our very best and set her up to have all the tools necessary to live her best life, just as any parent wants for their child. Thank you for taking the time to read Jael's story, and we are so grateful for anything given to help us reach this goal.