Sadly, around week 16 of my pregnancy, we received the news that a blood test that we had done, had come back abnormal. We also found out that we were expecting exactly what we were hoping for, a baby boy! On July 7, 2017, after a month of waiting patiently to get into a specialist, we received the news that our baby boy has spina bifida myelomeningocele, the most severe form of the rare birth defect, in which his spinal cord failed to develop properly. Spina bifida affects only about 1,500 babies per year, in the United States. Our precious baby boy has a large hole in his spine, located on his lumbar region- specifically L4-L5.
After being told of this diagnoses, we were presented with two options. Option 1, do nothing now, and at week 37 of my pregnancy, our baby will be delivered by c-section. He would then be taken into surgery within his first 36-48 hours of life to try to correct his birth defect. Waiting until he’s born to do corrective surgery has many risks involved. As the pregnancy progresses, spinal fluid may leak into his brain, causing hydrocephalus, which can put extra pressure on his brain and cause brain damage, cognitive problems, loss of coordination, incontinence, and decrease or loss of mobility. If this occurs, he will have to have a tube (shunt) inserted surgically into a ventricle in his brain to drain off the excess fluid. Currently, the ventricles in his brain are near normal, however, if we decided to wait until he is born, he would have an 80% chance of needing a shunt.
Option 2, have a relatively new fetal surgery done before my 26th week of pregnancy. The surgery would be done while our baby is still in the womb, and the surgery has proven to offer significantly better results than the traditional repair after birth. Because spinal cord damage progresses during gestation, prenatal repair may prevent further damage and reduce the risk of him having to have a shunt in his brain to only 20%.
Option 2, the fetal surgery, is what Chad and I, and our families feel is the right choice for us. Research shows that this surgery will give our baby boy the best quality of life possible. On July 16th, we traveled down to Children’s Memorial Hermann Hospital in Houston, Texas, for a three day evaluation to see if we qualified for the fetal surgery. We are so grateful to say that baby Daxx and I do qualify!
Unfortunately, based on the MRI and extensive ultrasound done during our time in Houston, it appears that Daxx has little to no movement below his hips. The fetal surgery may also help him regain some mobility, and we hope and pray that he may be able to walk with assistance one day, instead of being in a wheelchair full-time.
My surgery is scheduled for August 1st. I will be required to spend 4-5 days in the hospital after surgery, and then be required to spend another couple of weeks in a hotel in Houston, on strict bedrest. If all goes well, I will be released back to Oklahoma, where I will continue bed rest.
If all goes well, we will return to Houston at 34 weeks to wait out the rest of my pregnancy, and then I will have a scheduled c-section when I am 37 weeks. Daxx will have to remain in the NICU for a few weeks, or until he is well enough to go home. (A time that we absolutely can’t wait for!!!)
This diagnosis has changed our lives, and although we are absolutely heartbroken and terrified, we believe our baby is already a fighter and is one in a million. Chad and I, and our families, will fight with everything we have to give our son the best life possible. We are so excited to meet our son, Daxx Wesley Sylvan, toward the end of October, 2017. No matter what, he is a warrior and this diagnosis will not defy him. I know he will be one of the happiest babies out there.
We do not know what this next year will hold, but do know the journey will be emotionally, physically, and financially difficult. Due to my strict bedrest, and Daxx’s disability, I will no longer be able to work. The expenses associated with this diagnosis, surgery, birth, and care for a disabled child is huge, and will be virtually impossible for us to do on our own. We are so thankful for your thoughts, prayers, donations, and well wishes, as we welcome our son into this world. We look forward to the wonderful future that he has in store for him.
Thank you for helping us to help Baby Daxx have a great life!
- Mackenzie Doll
- K Smith
- Melissa Reid
- Ashley Jones
- Rose Baker
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