Baby Emmy’s Spina Bifida Journey

Emmy’s story: 

On Saturday, August 18, 2018 at 1:23am our beautiful baby girl Emmeline Marie Sedillo was born. She was 7lbs, 9.9oz and 20” long. It was one of the happiest moments in our lives when we heard her little cry after 8.5 hours of labor where her heart rate keep dropping, and I almost had to have an emergency c-section to deliver her safely, she made her way into the world. 

Moments after the doctors laid Emmy on my chest, as my husband and I stared in wonder at our beautiful baby girl and talked to her, telling her how beautiful she is, how loved she is, how excited we are to finally meet her, we noticed that all the doctors and nurses were whispering quietly and looking at the baby. The room had filled up again with many hospital professionals. My husband asked if everything was ok? What were they talking about? It’s then that my husband noticed it first, and brought it to my attention. Emmy had a huge bump on her back at the base of her spine just above her left side of her buttocks. The bump is so large in comparison to our tiny baby.

We received the measurements later when she was in the NICU that it was 9 centimeters by 11 centimeters. The bump is filled with fluid. We keep asking... what is the bump? Is our baby girl okay? What’s going to happen? Will it go away? And we received only vague answers of what it could possibly be. All the doctors and nurses spoke to us very calmly and stated that Emmy needed to go to NICU for tests (x-rays, ultrasounds, MRIs, blood tests) and observation so they could diagnose the bump and develop a treatment plan.

 I asked if if I could keep her with me just a few minutes longer, skin to skin, and try to breastfeed her before they take her to the NICU, and the doctors agreed a few more minutes would be okay since she was moving and breathing and her heartrate has stabilized. Handing her over just a few minutes later was heartbreaking.

Here we had gone an entire 39 weeks and 6 days of pregnancy with no idea anything was wrong with our baby girl. She passed all the genetic screening tests, all the ultrasounds, her heartrate was always strong, her movement always regular. We were floored. Completely shaken and terrified with this awful, empty, hanging off the edge of a cliff feeling in the pits of our stomachs while we anxiously waited to find out what was wrong with our sweet baby girl. 

Emmy spent the next 30 hours in the NICU. She received only an IV with sugar water in it to keep her going while she received an MRI, an X-ray, and ultrasound, and hourly blood tests. I was able to carefully hold her skin to skin but was not able to nurse her or feed her. They needed to keep her stomach empty in case they needed to do immediate surgery. 16 hours after Emmy was born, we received a visit from Emmy’s neonatologist with a still image from Emmy’s MRI and finally got a name to the fear that was gripping our hearts. Emmy has terminal myelocystocele. It’s a rare form of Spina Bifida, and she needs surgery.

Emmy’s condition is the worst case scenario of what we were told to expect when the doctors were answering our questions in the delivery room. We are told her condition is rare. In the United States, 1500 babies a year are born with Spina Bifida. Of those babies with Spina Bifida, only 1:1000 have the type that Emmy has. It means there isn’t a lot of experience of research on her condition, just a handful of case studies from other countries where a baby has been born with what Emmy has. 

Over the next 14 hours the NICU team slowly weens Emmy off her IV. I am allowed to nurse her and supplement her with formula to keep her blood sugar level so she doesn’t receive a shock to her system. It’s still her first day of life so the only milk I am producing at this point is just droplets of colostrum.

Emmy eats well and does great, by 9am Sunday morning she is returned to my room in the Mother Baby unit and we get some private time with our sweet baby girl. We roll up blankets in the shape of a donut so she can safely lay on her back in the crib and be comfortable. We don’t want to put any pressure on her bump. We spend the day getting to know our little princess and getting visits from various doctors and nurses.

We have an unlimited list of questions for the neurosurgeon so we write them all down. We are waiting to meet him in person and get one final test before we get to go home, an MRI scan on Emmy’s brain. We finally get the scan on Monday afternoon, it takes 4 hours. We feel an immense amount of relief that Emmy does not show any signs of hydrocephalus or spinal anomalies in the brain or upper spine. 

We meet Dr. Chao, the neurosurgeon treating Emmy, and learn a lot from him. We learn that since Emmy is stable and her lesion is skin covered, we can take her home and wait until she is stronger and a tiny bit older to have her spinal deterring surgery. Emmy’s medical needs won’t end with this surgery.

It’s been 10 weeks now since Emmy was born and she will be having her surgery by January. Spina Bifida is a lifelong condition and there is no cure for it, only treatment. Emmy’s entire life is going to include many, many doctors visits, tests, physical and occupational therapy, and potentially more surgeries.

We are already seeing a decrease in Emmy’s mobility from her knees down, and enlargement on her right kidney. This surgery may be the first of many, only time will tell.

Emmy is the greatest gift in this world and though she will have many obstacles to overcome, and have to work harder for the things so many of us take for granted, she is perfectly made and so loved. We will push through everything with her and adapt with her as needed.

We know not everyone can donate, but you can help us through Emmy’s journey with love and prayers, as well as sharing this campaign. A single share is so powerful. And please be sure to follow our daughter’s journey on [email redacted]nk you for reading!