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Featured Family: Erica and Jackson

posted Nov 14, 2015, 11:44 AM by Spina Bifida Fetal Surgery   [ updated Nov 14, 2015, 12:27 PM ]
Our Featured Fetal Surgery Family​ is Erica and Jackson.

We are from Michigan and had open fetal surgery at C.S. Mott Children's (University of Michigan) in 2015 
(Post Trial). We learned of Jackson diagnosis at our 19 week anatomy scan. The OBGYN, gave us horrible outdated information with a bleak prognosis. We were devastated. I went home numb but quickly got online and scoured the internet for all the information I could find. Some information was better than others. We followed up with a maternal fetal medicine (MFM) specialist from a larger hospital, and he gave us a different yet still bleak prognosis. At that point we asked to be referred to the University of Michigan where they had just started offering fetal surgery for spina bifida. We went for the assessment, met all the specialists and waited to find out if we were candidates. While waiting I connected with some of the best people who had gone through the process. With their understanding, insight and guidance, we were 100% sure that if we were eligible we would have the surgery. 

One day away from the deadline of 26 weeks, Jackson and I underwent fetal surgery. Jackson did amazing! He snuggled in until 34 weeks plus 2 days and was born by c-section kicking into the world. He had a short 5 day NICU stay and another 11 days on the pediatric floor to work on feeding issues (preemie-related, not spina bifida). 

My husband Jim, like many of the other dads of newly diagnosed babies, was torn between supporting me and working through his own internal struggle.  He was mourning the loss of the life he had envisioned for our son.  He felt angry and bitter...that is, until he saw Jackson for the first time.  When Jim came to see me in the recovery room, I asked him how Jackson was doing.  His response was, "He's perfect."

For moms and dads both, for anyone dealing with a new diagnosis, please know you child will he his or her own version of perfect.  Jackson is the light of our life, our only child and a blessing without measure! He is strong and healthy and just perfect! Jackson’s bony lesion is at level L2-­S5 and his soft tissue opening was from L3-L4. Jackson is a bright, inquisitive little man! He is on track with nearly all his milestones, even though he was born 6 weeks early. He loves to sit up and look around, and the outdoors are his favorite! He loves to snuggle close and read books, and he is a raspberry blowing champion!

Jackson’s interventions for hydrocephalus:  VP shunt.
Jackson’s current mobility equipment: None thus far.

Additional Information: Jackson was diagnosed with hydrocephalus and Chiari II malformation in-utero. His Chiari II reversed after surgery, and he has shown no Chiari symptoms to this point. Though Jackson's hydrocephalus was stable to slow-progressing through seven months of age, he did have a VP shunt placed when his head growth demonstrated no signs of plateauing.  It was a hard decision, but it was the right one.  His lesion level is from L2 down, but he has full function of all his major muscle groups in his legs...all the way to his little feet.

To parents of newly diagnosed babies with spina bifida, "You can do this!"  It's scary. You're going to be sad, then mad, then scared...wash, rinse, repeat. And that so ok! Don't put too much stock into early information you receive unless it is delivered by a pediatric neurosurgeon. Have an evaluation done at a hospital that performs the fetal surgery. You will get the best diagnostics and the most up to date accurate information...even if you choose not to have fetal surgery or are not eligible. You pick the hospital you want to use. Research them. You don't have to go to the one your doctor recommends. There are many here who traveled hundreds, even thousands, of miles to go to the hospital that fit. You are in the driver's seat. They work for you! 

Join the Expecting and Considering Fetal Surgery for Spina Bifida and the Spina Bifida Parents Group now. Ask questions and connect with people who have been where you are. You don't know it yet, but you have an army of supporters just waiting to help you navigate these waters. Some of these "strangers" will end up closer to you than me! Educate yourself, knowledge is power! 

Lastly...JUST BREATHE...these kiddos are AMAZING!

Jackson’s Blog: