“Spina Bifida will be part of their life, but it won’t be the most interesting thing about them”

Colleen Payne

April 14th we boarded a flight from Tampa to Philadelphia. My husband and I were accompanied by my parents, the incomparable Nancy and Dominic, as well as my lovely Mother-in-law Kim. We were a travelling party of 5 and a half. The parents had decided to drive, and so they arrived in the Pennsylvania area about half a day before Jesse and I arrived. We touched down in Philly, and made our way to a Sheraton nearby the hospital. I was already exhausted, and knew I had a really long few days of medical testing ahead of me.

All I wanted was a bed, a good cry, and a stiff drink. But only one of those was possible, as of course I had been abstaining from alcohol, and also Kim was staying in our room, and I did not want to subject her to my weeping. She was already stressed out to the max worrying about HER son, and we had that in common. My parent’s were staying with family friends in a suburb about 40 minutes from the city and so I would not see them until the following day. We checked into the hotel and noticed a cute dim sum place next door adjacent to the lobby. I drowned my sorrows in some bao buns and scallion pancakes, and then settled in for the night to try and sleep

The keyword there is TRY.

For some reason the hotel’s fire and emergency system was on the fritz. Twice during the night the loud siren/intercom began to go off and urge us to head to the stairwells and evacuate. Other guests had informed us this had also happened the previous day multiple times, and was a false alarm. Luckily within five minutes the front desk had come over the same intercom and urged everyone to return to their rooms. It was a long night.

The following morning we checked in at the hospital, and I stepped into the Center for Fetal Diagnosis and Treatment for the first time. I was met with many emotions. Relief that we were there, and being proactive about the baby’s health, fear that we wouldn’t qualify, general anxiety over the testing we had to do. I put on a brave face, checked in with the office staff, and our party of 5 and a half family members waited in the lobby area.

Eventually they brought us in to an ultrasound room, and began what ended up being a 4 hour ultrasound. They needed to take very specialized pictures of the baby from many different angles and he was just NOT cooperating. They measured every inch of his tiny body, which meant jabbing several different sizes of wands into my pelvis for 4 hours. It hurt. a lot. I had to ask them to stop and let me pee at least five times, as the constant pressure on my bladder was overwhelming. We changed positions, on my back, on my left side, on my right side etc. I did my best to suck it up and not complain, knowing that this was probably the easiest part of my day.

Below is a picture of our baby at around 12 weeks, so a little bit of a throwback. You can see here that his legs are crossed. In hindsight I think that is when I first started to get a gut feeling that there may be something the matter with his development. In all ultrasounds up to this point he had his tiny legs crossed at the ankles and we didn’t see independent leg movement in both legs. This was the case at my initial OB visit, and even at the independent gender reveal center we went to at 15 weeks, his legs were crossed in a way the tech couldn’t see his genitals. We thought we were going to have to re-schedule the session, until I sneezed and his legs moved, they were able to snap the pic and then promptly he went back to the same position. I tried to just convince myself that he liked that position, but my gut feeling ended up panning out. During this CHOP ultrasound they looked at everything, and we heard a lot of good things about his heartbeat and fluid levels, his weight was good etc. They eventually after a lot of work got some proof of movement and flexion in his left leg, which was awesome news. The right leg appeared to have some weakness in the knee and ankle area, but his hip movement was good. They advised that we may not know the extent of the damage until he was born and they could do some more testing. He showed signs of a Chiari II malformation, which is very common in SB babies and occurs when the spine pulls down on the cerebellum. So we now had some specific information on his development, at least for now. Some answers related to his renal function and exact mobility needs we will have to wait until delivery. But for people like me? Knowledge is power.

Our day continued with lots of emotional meetings with social workers, a genetic counselor, and a research team. The social worker was lovely, we discussed our support systems, and family dynamics, I’m sure they wanted to figure out if we had the means to re-locate should we be approved for the procedure, and whether or not we would have the emotional support we needed for this big event and transition. The genetic counselor and I went over our amniocentesis results, and both Jesse and I’s family medical history. What was interesting was that his chromosomal reports came back completely normal, no abnormalities at all. Which just gave me a flash back to my discussion with the OB about not having any risk factors/family history related to this medical condition. I told the genetic counselor as much, and she repeated what our Florida doctor had said. The repetition was comforting.

The day ended with a scan of the baby’s heart (Which was perfect btw, A plus little guy) and then I was to get an MRI. I have an issue with enclosed spaces, and had already had a very emotional day, so to say I was anxious was an understatement. Jesse and I walked to Radiology, and they put me in a really cool hospital gown, and told me to take off any jewelry I had on. This.. SHOULD have been simple. I took off my wedding band and engagement ring and stuck them in my husbands pocket. Took out the small earrings I had on, and then…. we hit a snag. In late October pre-pregnancy I had gotten my nose pierced. I loved it, it was super flattering and I got compliments on it all the time. The issue was…. it was my first and only facial piercing and for the LIFE of me, I had NO idea how to take it out. I twisted, I torqued, I knew the brand and googled the easiest way to take it off, and was met with dozens of google reviews saying I had apparently picked a style that was notoriously difficult to get out alone. I had my husband stick his man fingers in my nose trying to help me, nothing worked. Eventually the tech came in to see what had taken us so long, as im sure we had been gone for at least a half hour. She seemed irritated. I was embarrassed, and still sniffling told her what a spaz I was, and how I couldn’t remove it. Another tech came in, a middle aged woman who patted my hair and told me since they only had to look at my pelvis it would most likely not effect the machine and walked me down to the machine.

My anxiety had spiked at this point, and I felt like the machine would suffocate me. They put me in the machine initially and when my limbs began touching the edges of the tube I started panicking and asked them to please pull me out until I could calm down. The same woman (BLESS HER) pulled me out, and began to comfort me. She got me a pair of ear buds to wear, so I could zone out, they gave me a little oxygen to use while in “the tube” and a face mask to wear so I could pretend I was in bed napping, or… literally anywhere else. The combo worked, and I spent the next 60 or so minutes in the MRI machine. I was SO happy when it was over. I put back on my street clothes, returned to the waiting area where I met with my family who seemed really confused on why this had taken so long. Apparently that was the theme of the day.

So that … was Day 1.

All I can say is .. ooooof.