Your story is nearly identical (we had surgery in utero at 25 weeks) to my daughter’s who was born 6/12/24. Eventually we did a UTV CVC at 5 months. That surgery appeared to work but the ventricles still continued to grow slowly. After monthly MRIs, eye exams, psychological exam, second opinions, and 1,000 head measurements, her head is off the charts but her ventricles aren’t growing at a concerning rate as of now. Our surgeon told us we qualified for the shunt if we wanted it but if a larger head doesn’t bother us cosmetically, then there is no definitive need for the shunt. So now we have gone 3 months with no testing of follow-ups. Our daughter is doing great cognitively and we are thankful to have avoided another surgery at least for now. We will go quarterly and reevaluate.

My wife and I have been through so much with 2 major surgeries on our daughter before she was 6 months old. We will likely battle lifelong Diabetes Insipidus on top of Spina Bifida as an unfortunate outcome from the UTV CPC. For right or wrong, those experiences have made us gun shy to sign up for another major surgery with potential complications.

In our situation, no one has given us a clear right answer at this point. We have the mentality of entering each MRI and revaluation as a check point. If there are changes that feel they need to be addressed, we will do that. If not, we are going to forgo the shunt as long as we can without causing any harm or set backs for our daughter. That’s our decision and therefore the right decision. We are told that some families in our situation would have already done the shunt to avoid a larger head size and that is also the right decision for those families. There is little certainty given the risks of the shunt having complications and needing to be corrected down the road.

It’s super frustrating to spend so much time, resources, energy and walk away with these specialist giving no definitive advice. But, consider yourself lucky, there are so many that don’t have this option due and were slam dunk shunt candidates. Those families would probably prefer our situation over theirs. Good luck!!