My name is Tracy. I have a 4 yr old, Kate, and a 1 yr old, Caroline who has Spina Bifida. I am so excited about this website and all of the great resources on here in efforts to find a balanced approach with SB management.
I have a similar story as many, many people – negative AFP, older mommy, second child, no family history, healthy life, normal pregnancy, taking folic acid for years (oddly not for my first baby -she was a surprise and no SB), odds of SB with prenatal testing was 1 in 7000 (guess someone has to be the “1”)! We learned of the diagnosis on May 2nd at 2:45 pm (does anyone ever forget Diagnosis Day?). That day and the following week were probably the hardest times of my life. We were given the option of termination, our first
perinatologist didn’t know anything at all about SB (very frustrating), we declined fetal surgery (no judgements at all either way, just was not right for us), did not end up having an amniocentesis (again, no judgements, we just didn’t want to take the risk of miscarriage). Deciding on birthing plan was very hard. We ultimately decided for a induced (to fit with neurosurgeons schedule), epidural free, vaginal birth and it went great – delivery was about 20 minutes after contractions started, sac stayed intact, Caroline was born screaming and kicking her legs all over the place. Her back was closed at 24 hours old and we spent a total of 9 days in NICU. She was monitored with MRIs over the next few weeks – her ventricles kept growing so she had her ETV/CPC at 7 weeks old.
Caroline is cathed 4-5 times per day and is currently on Ditropan. Although entirely breastfed when starting Ditropan, she became constipated within 2 days and we had to start Miralax. She continued Miralax for about 6 months until I was just so tired of giving chemicals to her and wanted to try something different. She is now on fish oils, blackstrap molasses (this stuff if total magic), and probiotics to manage her bowels – no more Miralax and her bowels are better than they have ever been. She also takes D-mannose, corn silk, and Cranactin for her bladder health.
We got involved with early intervention even before she was born and do PT with them twice monthly. We are very proactive about PT at home, especially through a lot of fun play activities. Most of the time she does not even know she is doing PT 🙂 She started rolling over at 4 months old, sitting up at 5 months, standing (assisted) at 6 months, scooting on her bottom at 10 months and crawling at 13 months. She is already showing some signs of wanting to walk – will likely need AFOs. She is also very smart, knows quite a bit of sign language, and can scribble and paint beautiful pictures 🙂 Lastly, and most importantly, she is by far the happiest person I know.
She and her big sister are the absolute joys of our lives and we wouldn’t change a thing. Ok, yes we would get rid of SB if we could, but this is part of her and we love all of her, even the SB!
What I want to pass onto new families – diagnosis day is the absolute worst, lowest part of SB. Pregnancy is tough. The NICU is hard. Surgeries suck. There will be medications at times, and hopefully more and more can be managed naturally and without side effects. But it is all worth it, 100%. Our babies are amazing. Caroline has taught me so, so much already and I can’t imagine one moment of my life without her in it.