It was the day of our 20 week ultrasound. A regular check up for a regular pregnancy. Everything was going great and feeling well so we expected to see the baby and talk to the doctor and continue on like normal. After the ultrasound our doctor had different news for us. There were some images that concerned her so she was sending us to the hospital the next day to have a more specialized doctor examine an ultrasound, but it was probably nothing to be concerned about she assured us.
The next day we had our ultrasound appointment at the hospital, and when the doctor came in with a long face and said " Sorry to meet you in these conditions", our hearts sank. What could be so wrong with our baby? Everything's been going so great and healthy.
She went on to tell us our baby has Spina Bifida, and the way the medical staff broke the news to us and the sorrow in their expressions made us feel like our baby had a death sentence! What the heck is Spina Bifida and how do we make it better is all we cared to know.
As they explained a little about the condition our heads were spinning. It's a lot to take in when you think you're having a smooth sailing pregnancy. And when we were told we possibly have three options as we move forward....one being terminate the pregnancy. Not sure why they told us that option first but if they were looking for an emotional show they got one. Second option is postnatal surgery after the baby delivers normally. Ok we're getting a little better. Third is prenatal surgery, IF we qualify. Challenge Excepted!!
After trying to wrap our heads around what was happening we decided to start the stressful testing period that day with an amniocentesis. (Long needle draws amniotic fluid out of the uterus to examine baby's chromosomes)
In the weeks to follow we learned a lot about the unknown road ahead of us. Spina Bifida is a birth defect. By 28 days gestation the neural tube around the spine closes, but in our baby it didn't and there is an opening in the lower back and parts of the spinal cord and nerves come out along with spinal fluid creating a sac that exposes the nerves to amniotic fluid which causes damage to the nerves through the course of pregnancy. Since the spine is being pulled out, it pulls down on the back of the brain causing hind brain herniation and excess fluid in the brain. Lots of research has proven prenatal surgery gives a baby the strongest future outcome. The need for a shunt after birth is decreased by 1/2, improves mobility and improves the chance a child will be able to walk independently as well as improvement in IQ scores, and reduces the possibilities of incontinence.
There are 3.4 cases of Spina Bifida born for every 7,000 births in the US. Only 1/3 to 1/2 of those pregnancies qualify for prenatal surgery and there are only a few centers across the country that even offer the surgery. Midwest Fetal Care Center in Minneapolis has been offering it for 1.5 years, and after a couple of trips for testing, meeting with a social worker to examine if we can handle the stress, a MRI and lots of nail biting waiting, we found out we were approved!!! We would be the 15th open fetal surgery case for prenatal repair of myelomeningocele (MMC) in Minnesota. Our baby would be twice born.
There are risks with surgery but the benefits are much greater. Surgeons went in through Mandy's abdomen, exposed and manipulated the uterus so they could make an incision on the back side of it to expose the fetus. The repair is made and baby is tucked back in, the uterus closed and put back in place in the abdomen, and Mandy is closed back up. A weeks hospital stay and modified bed rest for the next 10 weeks
All this news and preparing for surgery happened so fast. At a time when we planned on working extra hours and saving for holidays and time off after our baby was due in February, Mandy is healing from surgery and has restrictions of leaving the house other than to weekly checkups in Minneapolis until the beginning of January when the baby will be delivered via cesarean at 36 weeks. Chad has taken this time off work to be a full time employee at home taking care of Lane, their 2 year old son, be the chauffeur to the several appointments, and with the risk of preterm labor and the uterus rupturing being so high, he has to be there ready to get to the hospital ASAP if needed.
Our baby will be premature for sure with a minimum of 1-2 weeks in the NICU. Past that comes the rest of the unknown. What other surgeries will be needed? What therapies will be needed? Orthopedic braces or assistive devices? Learning difficulties?
Every individual with SB is affected differently, and it is impossible to predict a child's outcome before or at birth. Some have more significant disabilities than others. It will be a long journey but we have committed as a family to fight for the best possible outcome for our newest addition. Not sure if it's a boy or girl but Baby Fighter has a team working with it to ensure a strong future and that Spina Bifida will only be a small part of it's story and not define the person it becomes.
Thank you for taking the time to visit our page and read Chad and Mandy's journey thus far.
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