About gastroschisis/carepaths/the plan for gastroschisis.org

Let me let you know why:

Gastroschisis is diagnosed at month 4-5 of pregnancy. For the next 4-5 months families deal with a barrage of scattered information and are put on the "high-risk pregnancy" unit and facility at their chosen hospital. During the last 2-3 months mothers must attended once a week and then twice a week ultrasounds to check for fetal development. During this time they are checking the baby for any complications they maybe able to determine from the gastroschisis and viability, if the baby is taking "practice breaths" in the womb. This lets the medical team know how to balance the baby and mother's birth date. Some moms will not be able to carry their babies to term as gastroschisis babies are notorious for dropping off the growth charts early (around 32 weeks) and coming early, thus battling both premi issues and gastroschisis issues. Some gastroschisis babies carry to full term and run the risk of being born still. So the team will balance the baby's development and assess if after 32 weeks they need to induce labor or wait. The medical team will wait as long as they can but not too long to make sure the baby has little to no preemie issues in addition to the gastroschisis.

Once the baby is born (preferably natural, less stress on both the baby and mom) they are immediately whisked in to a NICU for surgery and to develop a care path. All gastroschisis babies care paths are unique and different. Some may have a silo, some not, some may be fully ready to go home in 30 days while some may need multiple surgeries and can stay in the NICU for several months and up to a year. Some may return home with little to no special "hook ups" while others may come home with many different "hook ups" from GI tubes to central borowiak lines and ostomies. Whatever the case, as you research, you will find that currently there are no medical sites that list all possible care paths. Most sites are generic and state the medical definition and the "best case scenario" which is silo and 30-60 days in a NICU.

If you have just found this blog let me reassure you. The success rate for gastroschisis babies is considerably better than it was 10-20 years ago. You will be at a 80-90% success rate. But you MUST be aware that there is no pre-determined path for how long you may be in the NICU or confronted with issues until your baby is born.

We all hope that our parents will be able to return home in 30-60 days. But please be aware that most gastroschisis cases can take up to 100-200 days in a NICU.

After surgeries have been completed and sometimes even while they're assessing your baby's case they watching for poop. Once your baby has reassured your medical team that all functions in the bowels are working and the stomach enzymes are passing through they will start the feeding process.

No matter how much faith you have in your baby's ability to eat, (and I was convinced of this too with Avery) they will experience feeding aversions because they have been on a PCCC line since birth (a PCCC line is a central line run through any number of points in a baby's body, they can be placed through the foot, arms, or neck that runs nutrients directly to the baby's heart. A baby that has to stay on PCCC or central feedings for a longer time will seem jaundicey as the liver is not fully functioning and will start to break down a little bit.) I encourage you to speak to your medical teams about speech therapists early and get comfortable knowing them and them knowing your baby so when you do get to feeding stage they are ready to help should your baby not be taking to bottle/breast feeding quickly.

Now it may turn out that even though they think it's time to feed your baby's plumbing may not be ready. So even if you get here this may not be it. In Avery's case he was throwing all of his feeds up and couldn't make it past 10mls. This is also normal. It means something in the "plumbing" still isn't right and there maybe need for another operation.

You should also know that they must wait 6-8 weeks between every operation to see how the body repairs and if the operation was successful. So you may have one operation, need to wait 6 weeks and need another, then you wait another 6-8 weeks. Patience is key in all gastroschisis babies. You will watch other preemie babies born and taken home in days, other babies in and out but don't give up. Your time is coming. Be patient and sit on your hands as best you can giving your child all the opportunities to heal and show you and his/her doctors what he/she needs.

You're tell-tell sign that you are ready to go home will be when the PCCC line is removed or they set you up for a central borowiak for home care. Even still you won't completely be out of the dark. You need to monitor your baby's feedings closely. This will be an indication of any infections or irregularities in the bowels. All medical faculties will be ready to see your child and expecting your phone call so any suspicions go ahead and call your medical staff.

This is just a brief synopsis of what you can potentially expect. There is tons more information about gastroschisis and care paths and this is why we have worked so hard to acquire gastroschisis.org.

Currently our babies are under sub pages of hospital sites. There are plenty of support groups and places to post pictures and stories but when you get the diagnosis and you google the disease for information all that will pop up is a definition and that it will be a 30-60 day stay in the hospital with a silo. No mention of the reasons why, research, pre-natal care paths, neo-natal care paths that most commonly occur, resources and information for all stages of gastroschisis. There is just nothing comprehensive and definitive that you hang your hat on. There is nothing to give any of our parents any peace, any sense of control or any sense of comfort.

gastroschisis.org will be 100% medically comprehensive for all stages of gastroschisis and include information on research and development from accredited medical staff. No more searching and wondering "if," one site for education, awareness and medical support.

You no longer will have parents "learning as they go" or medical staff the same apparent disconnect between one facility to the next. This site will branch out and provide communication between hospitals and medical communities to not only unit families but unite the gastroschisis medical community.