God’s Plan for Baby Vine (Omphalocele and Myelocystocele)

Vine newborn 2

At 12 weeks pregnant the specialist at my doctor’s office explained to me that our baby had an omphalocele. When the baby is forming, the intestines and some of the organs are formed inside the umbilical cord and then they move into the baby at around 11 weeks. (bet you didn’t know that!). Well, they did not for Vine. They stayed inside his umbilical cord and continued to form and grow there. Picture a little water balloon on top of his belly button. However, having been diagnosed so early, the omphalocele was predicted to be very big at birth. Along with omphalocele they said that the chances are good that he would have heart defects as well as brain damage and were we interested in terminating the pregnancy? Good grief. Of course not. So we kept going knowing that our little lamb would need surgery upon birth to repair the omphalocele and that there were possibilities for many more complications over the next 28 weeks of development. So we just kept praying.

Vine - newborn

Then at 19 weeks our doctor found something in addition to the omphalocele. Vine had a clubbed foot. This caused the doctor to do a thorough inspection of his spine and lo and behold, he found something called a myelocystocele. Basically, spina bifid a, in his lowest vertebrae. Picture a zipper zipping down a sweater. This is how the spine forms. Well if you don’t zip the zipper all the way, part of it is left open and separated. Not fused together as one sweater. Vines lowest vertebrae did not fuse which was going to cause major issues with his digestive, bowels and intestinal tract which was already compromised because of the omphalocele. With the additional diagnosis, brain damage was imminent as well as malformation and most likely he’d be in a wheelchair, and oh-would we like to terminate the pregnancy at 19 weeks? I said to them “Even if this baby comes out a mangled mess with his leg wrapped around his head we will love him with all our hearts so PLEASE do not ever ask me that again.” I think they got the point.

Vine with Parents

As Vine continued to grow and develop, I had to have test after test after test done. Fetal MRI, Fetal Echo of his heart, ultrasounds every 2 weeks and was moved to Rush University hospital where they could have the team of surgeons meet me. At 29 weeks I sat in a conference room at Rush (still waiting for [my husband] Fanfan’s visa to be approved so he could be with me for all this) with 5 surgeons and specialists, telling me everything they were going to have to do to our son upon birth. They were going to take him by C-section at 39 weeks because they wanted him to be as big as possible. They kept saying “this is going to be a marathon, not a sprint”. I knew what we were dealing with but had hope that Vine’s quality of life would be the best we could possibly make it.We learned that Vine’s brain and heart were in perfect condition. PRAISE GOD! This was a small miracle in itself, causing the doctors to question their diagnosis because with these 2 abnormalities, brain damage and heart damage were expected. Something you need to know:  by itself, relatively common. Myelocystocele by itself? Relatively normal. BOTH of these abnormalities on ONE child? VERY VERY Rare. What was God doing? What was He trying to show and teach us? We were so confused. Then at 34 weeks and 4 days, I went into labor (ONE WEEK after Fanfan arrived in the US…). I wasn’t suppose to go into labor. I was suppose to have a nice, calm C-section with no labor……and now he was going to come early and possibly have underdeveloped lungs and make it hard to have any surgeries being a premie. But he came by C-section on September 10 at 12:40 in the morning. Was whisked away immediately. We didn’t even get to hear him cry. Once I was all stitched up and in recovery, they wheeled me to the NICU  so that I could see our baby for the first time as we laid next to each other both recovering from a long ride. He was 4lbs 7 oz (not bad for a premie!) and was actually breathing on his own-another miracle!

Pray for Vine

Now we are taking things day by day and praying for God to reveal his plan for Vine’s life. His brain and heart are still perfect and we can add lungs to the list of things working! His legs have sensitivity, even though there is massive nerve damage to his lower extremities and he recoils when you pinch his toes-a great sign. The omphalocele was not as big as they expected and there was no malformation of his face or body! We are waiting to see how God uses Vine’s story and ours. Thank you for caring and for praying for us. Your prayers are what get us through on the days we just don’t know what to pray. We know that God loves Vine more than we ever could and that He has a plan and a purpose for his life and that he is already changing lives.

Pray for Vine and Follow his journey HERE. 

Story written by: Julie Larame

This story was seen Real Imprints.