When we got Willow’s Spina Bifida diagnosis at our 20-week scan, we had no idea that one diagnosis actually brought with it several diagnoses. 

 

Spina Bifida is a neural tube defect. Willow’s spine wasn’t properly developed, and her spinal cord and nerves were exposed in her lower back. She had surgery at 1 day old to close this opening. And miraculously, she was only in the NICU for 8 days before coming home! 

 

Because of the way that your spine connects your brain to the rest of your body, Spina Bifida affects the whole body. 

 

Willow has little to no movement or feeling below her waist. This paralysis affects not just her legs, but also her bowel and bladder, also called neurogenic bowel and bladder. We use catheters to drain her bladder several times a day. And she’s on alllll the medications to keep the poo flowing 💩 

 

Willow’s brain was also developed differently. She has hydrocephalus, a build-up of cerebrospinal fluid, which she underwent brain surgery to correct when she was just 7 months old. Along with hydrocephalus, Willow has Chiarii II malformation, which has to do with her cerebellum and brain stem being pulled downward by her spinal cord. This often affects executive function—like ADHD or other learning disadvantages. 

 

During our many ultrasounds before she was born, we also found out she has bilateral clubbed feet. There was a treatment plan in place for her first year, but due to two femur fractures in her left leg, we had to postpone this treatment. She will have surgery sometime this fall to adjust and loosen her ankles and feet. 

 

And last but not least, we went to Houston right after her diagnosis to see if we were candidates for fetal surgery—they “birth” the baby’s back and booty, close the hole in their back, put the baby back in the amniotic sac, and hope and pray they aren’t born as a micro-preemie. 

 

During these specialists’ consultations, they discovered that Willow’s umbilical cord was wrapped around her left leg five times. The specialists said they had never seen anything like this, and said that there was a chance Willow could lose her leg even before she was born, but ultimately they could not perform the fetal surgery safely. Willow’s left leg has visible muscle loss and indentations from where her umbilical cord was wrapped so tightly around it. Her leg has also has proven itself to be quite fragile—she had two femur fractures in her first 3 months of life. 

 

All this to say, Willow is truly a miracle.
It’s a miracle that she did not lose her leg. 
It’s a miracle that she hasn’t needed a shunt to drain fluid from her brain. 
It’s a miracle she was only in the NICU for 8 days. 
It’s a miracle that she’s crawling. 
It’s a miracle that she is the happiest, most silly, constantly dancing baby girl that she is. 

 

Even with Willow’s long list of diagnoses, and the daily care and monitoring that we as her parents have to provide, Willow is here, and she’s our girl. We wouldn’t trade any of this—yes, things would likely have been easier without these diagnoses and disabilities. But Willow is thriving. As any one who has experienced living: There will be hard days ahead. And there will be good days, too. We trust and believe that God allowed this—that He created her in my womb—and that He doesn’t make mistakes. This Spina Bifida journey has taken us to low lows, but it has also brought us community, joy, and a deeper faith in the God who sees us and our every need. 

Thank you, truly, for walking alongside us and for being a part of #TeamWillow