Cadence was born on July 20, 2007 with Meconium Aspiration Syndrome and spent her first 12 days of life on oxygen. While recovering from this, the nurses began to notice things were not right with her. She lacked certain reflexes, was unresponsive in some areas and had very poor muscle tone. Keeping in mind we had discovered a knot in her umbilical cord at birth, the doctors began to suspect the knot had been tugged before birth and in turn, it cut off the oxygen to her brain. An MRI confirmed their suspicions, as it showed there was damage to a part of her brain called the thalamus. We were told there was no prognosis and we would have to wait and see how she developed.
Soon after this diagnosis, we received more bad news. We were having a hard time getting her to drink her bottles so a swallow study was performed. It revealed that Cadence was silently aspirating her formula and she was no longer allowed to be bottle fed. A feeding tube was placed in her belly and once she recovered from this surgery she was allowed to go home. She was there for just about six weeks.
Skipping ahead to today, Cady, who turns 2 in July, cannot walk or talk, hardly ever laughs, has difficulty using her hands and can't even sit up or hold her head up regularly. We feel cognitively she's all there as she smiles a lot, recognizes people and places, has her favorite television shows, enjoys listening to music and likes to play with certain toys. However, as we are sure anyone would agree, this is not enough.
We want Cady to flourish, be all she can be. We want her to talk to us, tell us her wants and needs. We want to see her run (or at least walk) alongside her siblings. We want to hear her laugh. We want to have her join us for dinner each night and enjoy the same foods we do. We want to hear her say, “I love you, mommy and daddy.”
By the time Cady hit the 18 month mark, it seemed like she wasn't going to get much better. A bath chair and then a wheelchair soon arrived, as did a special chair for her to use around the house. Though she had been given the okay to eat some soft foods, a swallow study in March revealed she was once again aspirating her food. She was put back to a strict g-tube diet and we felt like she had regressed. We started to accept that her disability is profound and she would require lifelong care.
But there's good news! Shortly before Cadence was born, we made the decision to bank her umbilical cord blood. We had no idea about the knot, but something told us we had to do this. We believed Cadence (our third and unexpected child) was our last chance to bank some cord blood that might one day save her life or that of one of her siblings. It turns out that it might instead give her a life.
Earlier this year, we received a letter from the company we used to bank Cady's blood. It said that the bank was teaming up with Duke University in North Carolina to conduct clinical trials on children with Cerebral Palsy (Cadence's official diagnosis is Spastic Quadriplegic Cerebral Palsy). The doctor doing the research is infusing children with CP with their own umbilical cord blood in the hopes that the stem cells in the blood will regenerate brain cells and essentially reverse the brain damage.
At first we didn't think a whole lot about the study. We thought it was a good idea to take part in it, but we weren't expecting anything to come of it. From what we knew, brain damage is irreversible, but if some researcher at Duke was attempting to prove otherwise, we thought I'd like to help her. However, what we soon found out was that this procedure has been done more than 100 times already and in nearly every case, it has worked to some degree! Children across the country are talking, walking, heck even running because of this treatment! One little boy was proclaimed free of his CP eight months after the infusion!
We were astonished and excited, anxious and guardedly optimistic when we learned this. We became aggressive about getting Cady in the trial and finally, after three months of e-mails and a ton of waiting, we got the news recently that Cady will have the infusion! We go to North Carolina in July and will be in a clinic at Duke on her second birthday. Probably not much of a birthday for her, but as far as we are concerned, there is no better gift.
However, we also learned that the procedure costs between $10,000 and $14,000, plus travel expenses, pre-procedural testing and costs of getting the blood from ViaCord to Duke. We were shocked to hear this news because we were under the impression that because it is a clinical trial, they will be covering the costs. Had we known, we would have begun planning for this much sooner. Because the procedure is considered experimental, insurance companies are not paying for it.
