Support Nunnery Twin with Spina Bifida

On April 24th, our family received the most exciting news from my daughter Jordan and her wife Amanda, that they are to expect twins due to arrive in December 2024, one boy and one girl. We are all so joyful for these two additions to join their two brothers! This Yaya can't wait to hold them both and shower them with incredible love.

Unfortunately, our joy for these new additions was soon switched to fear as we discovered at 20 weeks that my unborn grandson was diagnosed with Myelomeningocele, Spina Bifida, which is the most severe type of Spina Bifida. This condition occurs within the first 28 days of fetal development, unbeknownst to us, which further surprised us to learn so late within this pregnancy. This specific diagnosis is when a sac of fluid comes through an opening in the baby’s back that contains part of their spinal cord and nerves that will now be damaged. Immediate questions were asked as to how to fix this, or what his life will look like once he is here. Unfortunately, an option of open fetal surgery is not an option, as this is not a singleton pregnancy, but twins. Working with a pediatric neurosurgeon, it was learned that once he is delivered, within the first 24 hours of life, he will be having reconstructive spinal cord surgery and brain surgery, where a shunt will be placed to assist in the draining of excess fluid currently putting excessive pressure on his brain, as he has developed hydrocephalus, which is extremely common within Spina Bifida patients. Then he will be admitted to the Level 4 NICU (Neonatal Intensive Care Unit) for a minimum of two weeks. As for his prognosis, it was shared that nothing will be known of his long-term effects until he is delivered and begins to hit milestones, which are expected to limit or prohibit his mobile functionality, including walking, sitting up, along with several other disorders such as seizures and organ dysfunctions.

Fear continued at 29 weeks, where they were thrown yet another curveball. The OBGYN who had delivered their last son and had cared for Amanda during this pregnancy now felt they did not have the appropriate tools needed to safely deliver both babies while keeping mom safe. During Amanda’s last delivery with their youngest son, Amanda had hemorrhaged due to severe scar tissue. The fear moving into this delivery is that the scar tissue will be considerably more, causing the space to remove both babies to be significantly smaller. In this case, doctors would utilize a vacuum to assist babies out; however, due to his Spina Bifida, this is not an option. The decision by her team of doctors was to transfer all care to Tampa General Hospital. This includes their pediatric neurosurgeon and high-risk maternal fetal medicine team, who monitor Amanda every two weeks.

While baby girl stays healthy and unaffected by the diagnosis of her brother, the medical care required for baby boy, facing the two surgeries and a lifetime of ‘tune-up’ surgeries that are inevitable, has become beyond what they are able to manage on their own even for two full-time working parents. Every contribution will go directly towards travel expenses, surgery costs, post-treatment care, specialized equipment, physical therapy, and any loss of wages during this time. Your support will allow them to focus on caring for his needs, while also ensuring care for their other children without being overwhelmed by the financial burden, which is the purpose of this GoFundMe. No donation is too small, and even if you are unable to contribute financially, sharing their story within your network, community, and churches would mean the world to us. We are so grateful for your ongoing support, prayers, and kindness during this difficult time.

With our deepest gratitude,

Brandi and Tim Lewis

(Yaya & Papu)