Help with Ryder's medical expenses

On February 19th, 2021, our son Ryder was diagnosed with spina bifida, a birth defect that kept his back from closing completely. We were told he’d be born with the most severe type of spina bifida, myelomeningocele, and that he had hydrocephalus, chiari malformation II, clubbed feet and we saw no movement of his legs. After lots of research and completing extensive testing over the course of 2 weeks, we were approved for fetal surgery to repair Ryder’s spina bifida inutero. Although fetal surgery is not a cure for spina bifida, it can help minimize and possibly reverse some of the effects of spina bifida to help offer our son a better quality of life.

Fetal surgery involved having a c-section, taking my uterus out to make an incision on the back side (I had an anterior placenta) so that doctors could reveal Ryder’s butt and back out in order for his neurosurgeon to repair his back. Surgery went well, however, five days later my water broke and I had to remain in the hospital for the remainder of my pregnancy with the hopes that Ryder would remain inside to continue growing as long as he could. It didn’t last as long as we planned, Ryder was born on April 17th, 2021 – just 3 1/2 weeks after having fetal surgery at just 28 weeks and 2 days gestation. He has been in the NICU for 10 weeks – we continue to watch him grow and wait patiently for the day we can bring him home. 

We have not been told a discharge date yet, but Ryder needs more time to grow to master feeding and breathing on his own. He’s doing really well considering he was born 3 months early. His chiari malformation II has completely reversed which was the top reason we opted to undergo fetal surgery. In some cases it can lead to the most severe cases of spina bifida which lead to lifelong challenges with feeding, breathing and cognitive abilities. His hydrocephalus has stabilized and our neurosurgeon is hopeful that he may not need treatment, but if he does that he will be older and may qualify for newer treatment options like the ETV/CPC to help drain fluid if it continues to build up and creates pressure. His back has closed and has finally shown signs of healing well. His orthopedic issues are currently our biggest concern. He was born with bi-lateral clubbed feet, hyper extended legs and dislocated hips. There’s only so much we can do to treat his orthopedic issues from the NICU, however, once Ryder is home we will begin treatment for his clubbed feet and knees and expect his hip dysplasia to be addressed when he’s a little older once his other ortho issues are corrected. 

While in the NICU we learned of a well known orthopedic doctor in West Palm Beach, Florida who has a great reputation treating kids with spina bifida, especially those with clubbed feet. We are still learning what this process will look like for Ryder and some of it will be determined as he grows, but we anticipate we will be taking many trips to West Palm Beach over the upcoming year in order for Ryder’s knees and feet to be corrected – most of which will be through a series of casting and bracing to help his legs and feet learn to position properly so that we can someday work on helping him grow stronger to become more mobile. In addition to the costly fetal surgery and nicu expenses, we anticipate added costs to travel for this specialized orthopedic care and anticipate he’ll been seen by several specialists in Orlando to continue to monitor his health through the year ahead. We also expect for him to begin physical therapy at some point in the first few months after he comes home in order to help him grow stronger. Once he is evaluated a therapist will help determine a plan of care – but many spina bifida families we know do therapy weekly.

I have not worked since fetal surgery in March and will be taking FMLA (maternity leave) unpaid in order to be beside Ryder in the NICU and appointments we have ahead once he is released from the hospital. Many of you know that it is so incredibly difficult for us to ask for help. This is so hard to do but we finally feel it’s time to ask for help and open up an opportunity for our family and friends to be able to extend support to help us through these tough times. We’ve spent the past 4+ months trying to remain strong and being there for Ryder – but we know spina bifida is a lifelong condition and still have a lot of uncertainty ahead of us. Anything you can do to help will be greatly appreciated. 

Thank you all in advance for your support and encouragement – we’ll continue to share Ryder’s journey with you all so that you can witness his progress as we navigate this journey ahead of us.