About Scout: Our family's journey of early detection and life with Spina Bifida, by Elizabeth WatkinsRead Now
Scout is our 3rd child, the youngest of three girls. Both of our oldest children are perfectly healthy and pregnancies were normal. When we found out that we were expecting our 3rd we had no idea how different things would be; and in our story different changed our lives in the most beautiful ways.
I was 35 years old for this pregnancy and considered advanced maternal age. At 9 weeks gestation my OBGYN did an ultrasound to ensure viability; and at 11 weeks blood testing which ruled out other abnormalities, everything was normal.
Then at 18 weeks an anatomy scan, and the next day the OBGYN called with the stomach churning news "there are abnormalities in the baby's brain". She said that she didn't know enough to make any diagnoses and that we would be referred to a perinatologist- a specialist for further assessment. We saw him 3 days later and within seconds of reviewing her imaging, he said "your baby has Spina Bifida and she is going to need surgery". As devastating as that news was he also told us about the options, one being fetal surgery.
3 weeks later after extensive testing we were referred to CHOP in Philadelphia for fetal surgery because this was not offered in Florida at the time. On 11/16/2016 one day shy of 23 weeks gestation Scout and I went into fetal surgery to repair her L4 Myelomenengocele.
We had to stay in Philadelphia for the next 30 days under close observation and then were released to the care of Winnie Palmer Hospital, Orlando Fl. We were the first fetal family ever discharged from CHOP to Winnie Palmer and Scout was the first baby born at Winnie post fetal repair.
Scout was born at 36 weeks gestation via c-section weighing 6lbs15oz. She was sent to the NICU as a precaution, however everything was normal with the exception of enlarged ventricles and she was discharged home with mom after 3 days.
We knew there would be challenges and did our best to prepare. At 8 weeks old Scout started early intervention with Early Steps Volusia County and she continued with them until the age of 3. She had an EP Shunt at 9 months old and she started walking independently at 2 years old. She does not use a walker or have braces and she graduated from OT early at about 18 months old. She has no cognitive deficits and does not qualify for an IEP at this time.
We continue to watch her closely and have found great support in a network of children's services through Early Steps and Arnold Palmer Children's Hospital. We always have kept the attitude that as long as we see progress we are headed in the right direction. We don't compare Scout to her sisters or any other child, she is uniquely who she is and although we acknowledge her differences we do not limit her.
Beyond being our miracle, Scout is the perfect outcome of early detection and early intervention. Her life and our lives are the best they can be because of the services that have been offered to her.
Every child deserves the best life possible and that is made possible through programs like Early Steps.
We are forever grateful and share Scouts story to keep the share hope, empower and inspire.
The Watkins family,
Ty, Liz, Maya, Rue and Scout
8/7/2020 04:30:48 pm
I think that the journey is a lot more important that the destination. This is something that everyone is aware of, but I do not think that a lot actually acknowledge it. If you ask me, there is nothing more important that this. To be honest, what I want to do is just make my journey as great as it can be. I seriously hope that it works out at the end. I mean, what is the point if it doesn't, right?
3/27/2022 03:18:51 pm
Mom is a nurse
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