Week 21 - Materal Fetal Medicine by Shawna

Week 21- After a long few days of waiting, unknowns, and scary research online we finally got to meet with Maternal Fetal Medicine on Tuesday, August 11th.  All we were told before the appointment was to plan on being there for 3-4 hours and don't bring small children.  We met for an hour with the ultrasound technician and then the physician.  During the ultrasound it was confirmed that our child has a severe form of Spina Bifida called Myelomeningocele.  In addition to the Spina Bifida our child also has Bilateral Club Feet and Arnold - Chiari Malformation.  We then sat down with our specialist to go over options.  There are two options that we were considering and a third option that we would never consider. 

The first option is the "conventional" route where I am closely watched but able to continue with pregnancy as normal, working and up about.  I would have a scheduled C-section at 37 weeks and the baby would be operated on by a Pediatric Neurosurgeon to close the opening 24-48 hours after birth.  This route has a high probability of your child needing a shunt (80%), your child being in wheelchair or only walking with assist devices, lack of bladder and bowel control and a possibility of cognitive/learning disabilities. 

The second option would be to apply and hopefully qualify for an In-Utero surgery done at one of three hospital across the United States that are able to perform the surgery.  Our specialists refer to CHOP, the Children's Hospital of Philadelphia.  This surgery doesn't come without risks and extremely high standards.  If you would like to read about the qualification process, please click here.  While this option is riskier than the first, it also could afford our baby a better quality of life.  There are no guarantees, but we are willing to do anything and everything for our child to have the best chances for that better quality of life.  We will hopefully avoid the shunt all together and our child will also hopefully have a greater chance of walking on his/her own. 

The hardest part in this whole situation is the hurry up and then waiting.  After our appointment with the specialist on Tuesday morning, I went back for an Amniocentesis to start the process for qualifying for the surgery at CHOPS.  They need to rule out any genetic factors and need to look at all chromosomes to do so.  We found on out Friday morning that all my chromosomes and initial testing came back normal.  The second round of testing from the Amniocentesis is to find the AFP number.


I included a picture of our little one who likes to wave at us during ultrasounds and also do flips so the ultrasound technicians can't see his or her spine.  What a stinker!