Within a few days of learning that Whitney has spina bifida, we learned about a clinical trial called Management Of Myelomeningocele Study or MOMS. Apparently, three hospitals have been operating to correct babies spinal lesions in utero instead of waiting until after the baby is born. The theory is that by correcting the spinal lesion while the baby is still developing, the baby may have more lower body functions and less need for a shunt.
In 2001, the National Institutes of Health funded a study to determine whether this procedure should be more widely practiced. The study is recruiting 200 women to participate. Half the women will have the in utero procedure while the other half will bear the children at term and the lesion will be corrected with the traditional procedure. Before the study started, 248 women had the in utero procedure.
We quickly learned that the study has very stringent requirements including that the surgery occur between the 19th and 25th week of gestation. (We found out that Whitney had spina bifida in the 21st week, and we are now starting the 23rd week.) We made contact with MOMS about a week later, and started learning about the complications and potential benefits from the trial. All the while, we have been praying for the Lord to show us how He wants us to proceed. He has brought doctors and women who have participated in the study into our lives to give us additional information and counsel. He has reassured us that the people who are managing the study are among the best in caring for spina bifida in the country. So far, He has kept the door wide open to participating in the study.
The in utero surgery involves opening Susan's uterus to cover the exposed spinal cord on Whitney's back. Specifically, one doctor would make a midline C-section incision to reach Whitney, a pediatric neurosurgeon would correct the lesion, and then the first doctor would close the uterus.
After the surgery, the woman is put on full bed rest for about a week, followed by another week and a half of moderated bed rest. All the while, the team works to avoid pre-term labor. Assuming that the baby is not born early, the baby is delivered by c-section at 37 weeks.
Some of you may have seen a photo in USA Today of the surgery where the baby boy's hand reaches out of the uterus and grabs the doctor's finger. Definitely worth seeing.
The Potential Benefits
The MOMS team is hopeful that the study will show that in utero surgery helps people with spina bifida develop improved motor function in their lower limbs, improved bladder control, diminished Chiari malformation, and less need for a shunt. They have seen some evidence of these gains in the pre-study surgeries. The most promising benefit is a possible trebling of the chance that Whitney will not need a shunt.
To their credit, the people we have talked to at MOMS have been very honest about the risks associated with the surgery. Specifically, there is about a 5% chance of infant mortality, and a 10% chance that a baby will be born before the 30th week. The average gestation for a baby who has the surger is only 33 weeks. The risks to Susan include the normal complications from major surgery and the increased risk of miscarriage or uterine rupture in future pregnancies.
Our biggest concerns about the surgery are the possibility that we are trading possible future improvements in Whitney's quality of life for the complications related to pre-term delivery, and the risk to future pregnancies caused by the injury to Susan's uterus from the surgeries.
We will be travelling to Philadelphia to the Children's Hospital of Philadelphia (frighteningly abbreviated "CHOP"), in the next few weeks to have a final consultation regarding the surgery. If we opt into the study after the consultation, they will randomize us to determine if we will have the surgery or go home and return to CHOP to deliver at full term.
If after we opt in, the Lord places us in the surgery group, the MOMS team will perform the surgery within a few days. We will have to remain in Philadelphia until the baby is delivered. Fortunately, the people I work for have thrown their total support behind whatever decision Susan and I are led to. If we have the surgery, I will return home while Susan recovers to pick up Fiona and a family member and then return to Philadelphia to stay with Susan until Whitney is born (in December, we hope). We plan on renting an apartment, and hope that friends and relatives will be able to stay with us to take care of Fiona while we are out there.
Please pray that we will have the wisdom to discern whether we should participate in the MOMS trial. You can click on the headline on this post for more information on MOMS.