So most of you know that we participated in the MOMS trial, which has just recently ended. For those of you who don't, here is the back story...
At 24 weeks, we found out that Madison would have SB. We were quickly sent to Philadelphia to be evaluated for a clinical trial called MOMS. It was trying to determine if SB babies did better after having their opening closed in-utero, versus the traditional approach of closure surgery shortly after birth. There were two groups, and participants were randomly selected for either group. We were accepted into the trial, and randomized into the postnatal group. This meant we returned home until 37 weeks, and then went back to Philly for the delivery and surgery. I had mixed feelings at the time. I wanted to do what was best for Maddie, but I couldn't stand the thought of being away from Mason for months on end. So I was a little relieved when we were told postnatal. I felt it was the best of both worlds...I got to go home and continue with a somewhat normal pregnancy, and I still had the benefit of the most amazing doctors and facilities on our team for the birth and care afterwards. I was at peace with the decision.
This week the results of the trial were made public. There has been lots of press on it, and it has caused alot of mixed emotions among the SB community, and for me, personally. It's hard to watch a clip of a kid playing basketball, showing no signs of SB, and hear them attribute it all to the fetal surgery. It causes people to assume he's been "fixed". And that is not true. On the other hand, it's also not safe to assume that kids who did not have the surgery, will automatically fare worse than the others. Each child is unique, in every way imaginable...And I hope all this new attention doesn't try to define each child, and determine their abilities and inabilities just based on which group they are in. Maddie is doing some pretty remarkable things while representing the postnatal group, and I am still at peace with our decision. (for those reading this on facebook click here)
I know that we were meant to be in the postnatal group. I know that I did all I could to give Madison the best possible chance. I know that I walked through every door that was opened to me, and I know that the doors that remained closed, were closed for a reason. I have no regrets about joining the trial, and I feel incredibly fortunate to have been given the opportunity. It is so exciting to think of the developments that will come from this trial...the possibilities are endless. And even if the media coverage is a little off base, only good can come from all the publicity and awareness that the press brings. An SB diagnoses today, is not what is was yesterday...and that is a good thing.
Quarantined. That's how I feel. We are all sick, and it's been almost a month since we were all healthy. It started with Mason. He came home with a cough one day in January. I decided to keep him home because he looked terrible, and the cough and congestion were pretty nasty. The principal called to let me know half of his class was home as well, and some had tested positive for RSV. Great. So he stayed in, got better, and finally went back. A day later he was sick again. SO he stayed home for another week...He's finally on the mend, but now Chris and I are sick...which of course is a bad thing. A 4-yr old who's been couped up, and finally feeling better is no match for 2 parents just coming down with it. And then last night, Maddie started coughing. Ugh. She has sounded ok today, but still coughing a little more than I'd like...so we will see. Chris is passed out on the sofa, I'm chugging cough syrup, and we are rationing out the last of the chicken soup...Should be an awesome Valentines weekend.
While bathing Maddie on Wednesday night, I noticed an area on her right tush, just below the hips that appeared to be swollen, and jutting out. I'm not gonna lie...I was freaked out. Enough to call Chris in to examine it with me...Enough to take pics and email them to our PT...Enough to post those pics on an online SB support forum. Yikes. So the pics went out, and the answers started rolling in. Possible CSF leak, fluid-filled cyst, shunt malfunction, scar tissue. I was a nervous wreck. So the next morning we had PT. Michele looked at the spot, and determined it wasn't anything with her hips or an injury, but she thought it would be good for our neuro to take a look at it as well. Luckily, we had a neuro follow up later that day. So we prepared ourselves for the possibility of an MRI, and further examination. Neuro took one look at it, felt it, and announced, "Looks like she's a chunker!" HUH?! Official diagnoses: "funky fat deposit." I named it Bertha. So here I was, just a few days after saying I would be exhaling more, holding my breath over a "funky fat deposit"....Sheesh. Live and learn...and when I feel the need to overreact again, I'll just check in with Bertha.