Prognosis: Hayden will be 22 weeks along on Wednesday. His opening on the spine is at L5 or S1 which is at the sacrum. His brain is swelling but he does not have club feet. If we qualify for the study, we need to have a further evaluation of 2-3 days at the University of California in San Fransisco where the surgery would be preformed before gestation is 25 weeks. We would need to move to SF from the time of the surgery until gestation is 37 weeks, mid to early February, for the second c-section. http://fetus.ucsfmedicalcenter.org/myelomeningocele/
The study would pay for the best care in the country, for our travel to SF, a place to stay and for all our meals. However, they discourage us from bringing Hanna due to the need for bed rest following surgery and the need to schedule many doctor follow up appointments.
Once per month, our church asks its members to participate in a 24 hour purposeful fast to pray for any special needs for yourself or for others. This Sunday, we will be participating in a fast with the prayer that Hayden be granted the opportunity to receive the in utero surgery that may help his little body to heal. We are asking that if you are able to fast, that you would also pray for our baby Hayden and his participation in the study.
The in utero surgery is very risky but it is thought that it may 1) reduce the chances of Hayden needing a shunt in his brain and 2) protect his nerve endings on his spine from further damage.