Isabella (Bella) is a one-year-old little girl who lives in Verdon, Nebraska with her mom, Sarah and her dad, Thomas. She is a joyful, sassy, and determined little who is full of fight. Her favorite things are smiling, dancing, and being outside. She brings hope and joy to anyone who is fortunate enough to know her.
Sarah went in for her 20-week ultrasound assuming a typical visit where they would find out the much anticipated gender of their new baby. The ultrasound technician took longer than normal when performing the scan and kept asking Sarah if she had had any issues with her pregnancy.
The technician stated that she was seeing some deformities and a spot on the baby’s spine. The doctor came in and stated that he was seeing obvious signs that the baby had Spina Bifida – a neural tube defect that occurs in the first 28 days of pregnancy where the spine doesn’t fully close off, leaving the spinal cord exposed through a gap in the backbone, resulting in variations of issues due to nerve damage. Bella has one of the most severe forms of Spina Bifida. Along with the diagnosis of Spina Bifida, she also has been diagnosed with Chari II Malformation, hydrocephalus, and neurogenic bowel and bladder disease.
Shortly after the diagnosis, Sarah and Thomas were set up with a maternal fetal medicine doctor who presented them with three options for moving forward. They could 1 – Wait until she was born and then they would perform surgery. 2 – Perform fetal surgery, which was the riskiest option, but also had the most benefits for Bella. 3 – Abortion. Sarah shares that 68% of these cases are aborted, and that “It’s not even the discussion of pro choice or pro life. It’s more that we need to fight for these kids because they’re worth it.”
Thomas and Sarah ended up choosing fetal surgery. They were given the chance to partake in a clinical trial at Texas Children’s Hospital that would hopefully give Bella the best quality of life possible. They uprooted their lives and temporarily made Texas their home for nine weeks as they went through this journey. The surgery came with loads of risks for Sarah; she shares, “The risk for fetal surgery is the mom takes all the risk and the baby gets all the benefit.” Sarah knew she had to pick fetal surgery to give Bella the best chance and “never questioned it, not once.”
At 25 weeks gestation, the baby and Sarah underwent a fetoscopic in-utero repair of Bella’s myelomeningocele. They were only case number 48 in the entire world for this specific clinical trial and had 20 doctors in the operation room during the surgery. The surgery was not a fix or a cure, since there is no cure for Spina Bifida, but the goal of surgery is to allow the nerves to not be further damaged and to retain what functions the baby had at that point. Sarah was cut open, similar to a c-section, and then they pulled the uterus out and performed a lacroscopic-type surgery on the uterus. The doctors worked as a team to close the spot on Bella’s back that was open.
Thomas shares, “It was the longest four hours of my life. Words really can’t describe how you’re feeling. Really, they’re taking someone and you don’t know if you’re ever going to see them again. Whether you’re going to see mom or Bella. You really can’t describe that feeling of if they’re going to come back.”
The surgery was considered successful and Sarah and Thomas remained in Texas until she was 32 weeks pregnant; she then received clearance to go back to her hometown in Nebraska where they could surround themselves with the familiarity of their own community. Thomas shares, “Our support group is just amazing, and it’s not only just family, but we have some of the closest knit friends that anybody could ever have, which makes it a family. From day one we’ve never really dealt with negativity, we’ve never really dealt with anything but positiveness.”
Bella was born at 34 weeks and only spent 13 days in the NICU. At 5 months of age she underwent brain surgery for her hydrocephalus. She has a ventriculoperitoneal shunt, which is a device that drains the extra fluid from her brain, and will have this shunt for the rest of her life. She is currently doing really well and is such a joyful and happy child. When asking Sarah what her biggest hope for Bella is, she strongly states, “That she keeps the fight in her.”
Time to get loud shouters!
Bella has a long journey ahead of her and will require several different kinds of doctor appointments, therapies, and medical equipment throughout her life, but she has already shown the world at just 25 weeks gestation what a fighter she is. There is no doubt that Sarah’s hope for Bella will always be true – she is a fighter through and through.
Throughout the entire month of June we will be shouting love for Bella. We hope you will join us in getting to know this incredible family and supporting them.
So click here to shop now where every purchase will help cover the costs of medical equipment and therapies not covered by insurance. You can also start a monthly subscription and shout love for great families each month!