Fallon’s Spina Bifida Journey

My name is Debra and I have started this Gofundme to help relieve some of the financial stress for my daughter Nikki as she cares for her daughter Fallon who has Spina Bifida.

Please take the time read and share Fallon & Nikki’s story:

Nikki is a hard working, single mother of 3 beautiful children; Camden, Harlow and Fallon. She had a long, rough pregnancy with her youngest daughter and a very scary birth experience. Fallon was born via C section on December 5th, 2021. When she was first born she was limp and it took some time to get her to cry. The pediatrician also noticed she had a mass on her lower back and suspected Fallon had Spina Bifida. They wanted to send her to Children’s hospital in St Paul where there were neurosurgeons familiar with her condition. Fallon would also need to undergo a 72 hour body cooling procedure in the NICU which would help repair any damage done by the lack of oxygen during birth. Nikki was only able to spend about 15 minutes with her beautiful newborn baby in the hospital nursery. Fallon was taken by ambulance to St Paul, a 3 hour drive, during a blizzard that afternoon. Because Nikki had a C section and also experienced some blood pressure issues she was unable to leave the hospital to join Fallon until Wednesday (she was born Sunday).

Fallon had her first MRI on her brain and spine in the NICU on day 5. Her brain showed no signs of damage and she had not experienced any seizures. She was diagnosed with lipomyelomeningocele, a form of Spina Bifida occulta. SB is a neural tube defect that occurs around week 4 in pregnancy when the spinal cord is forming. This is not genetic or hereditary or anything caused by the parents. 1 out of around 1400 babies are born with Spina Bifida. It is often undetected in ultrasounds like in Nikki’s case. She had many ultrasounds during her pregnancy including a fetal echocardiogram because they were having a tough time getting images of baby’s heart, but no one noticed her SB. It was decided that it wasn’t necessary to operate immediately since her spine is totally covered in skin and there isn’t a risk for infection like other forms of SB. She also showed no signs of bladder or bowel issues, a very common symptom. They were discharged on day 8.

Fallon has a fatty lipoma on her lower back right above her butt crack and it has a sacral dimple and red birth marks, clear visible signs of Spina Bifida. Fallon’s spinal cord is tethered inside this mass on her back. As she grows her spine will continue to pull and be stretched and can cause discomfort and many issues. There is also a small piece of extra bone from her sacrum that you can feel in her bump.

Fallon is now almost 5 months old and just had her follow up MRI. No big changes were found. The biggest symptom Fallon is currently experiencing is significant weakness in her little ankles and feet. It is very likely she will need braces to assist her with walking. Since she has this weakness and low tone in her lower extremities, surgery is recommended at this time. Due to the neurosurgeon that is following Fallon leaving at the end of May the only day possible to complete Fallon’s surgery is Monday, May 2nd. This gives Nikki 3 days to arrange care for her other children, extend her leave of absence and prepare for a long hospital stay.

Fallon will undergo a laminectomy and a spinal cord detethering. This surgery will take about 7 hours from start to finish. Fallon will then need to lay flat for 5 days while she heals and will remain in the hospital several days after that. There is a risk of a spinal fluid leak which would require further hospitalizations to clear up. Bladder and bowel issues could also begin to occur after surgery. There is also the chance of her spine re-tethering in the future, especially after growth spurts.

Nikki has been on a leave of absence from work since the Friday before Fallon was born. Her job does not offer any paid maternity leave of any kind including short term disability. Her sick leave and vacation were exhausted in February and she has been surviving on any tax returns she received. The neurosurgeon said to plan to be out of work for an additional 1-2 months while caring for Fallon after surgery. Since it is unknown if any complications will occur, it is hard to say when Nikki will once again have income. She has already endured significant financial stress during Fallon’s 8 day NICU stay, a second 6 day hospitalization in Minneapolis for weight gain issues, 2 additional trips to the cities for follow ups that required hotel stays and now this upcoming stay for surgery. Please take the time to consider making a donation to help Nikki and her family cover housing costs, utility bills, travel expenses and other financial burdens after these months of lost wages. Any donations of any size are so very appreciated! If you are unable to donate please share and spread the word!