Due to complications from HELLP Syndrome, my oldest daughter, Olivia, was born 4 weeks prematurely on Halloween 2007. Olivia struggled with eating at birth and after being at a children’s hospital 2 hours from home for a week we were transferred closer to our home- probably because I was losing my mind and they wanted to get rid of me (kidding but not). She arrived via special transport to the hospital 10 minutes from our house with an NG tube and still slightly jaundiced. The pediatrician we had chosen came to see her as soon as she arrived and decided to pull the NG tube and see how she did. Looking back now I am not sure we would have gone along with that, but as new parents and not knowing anything else was going on we thought it was a great idea! And really that has been the mantra of our PMG Journey- “Let’s try it and see how it goes.”
Miraculously (or maybe because I was more relaxed and she had super fancy bottles), she began eating and steadily gaining weight. Olivia continued to struggle to meet milestones throughout her first year- she didn’t sit up unsupported, roll-over, crawl, pull to stand in the typical time frame- or at all. The only thing she did do on schedule was smile. Olivia was the happiest baby I had ever seen and continued to be the happiest kid around until puberty (but I guess that is normal)!
Her father and I repeatedly raised our concerns about her delays, but pediatricians attributed them to her premature birth. At her one-year checkup, doctors recognized that she was not developing as they anticipated. They recommended a visit to a geneticist, who promptly ordered an MRI. The MRI showed that Olivia had bilateral polymicrogyria, pachygyria, partial agenesis of the corpus collosum, and microcephaly.
We visited the Brain Malformation clinic down at Boston Children’s and met with neurologists, PTs, OTs, SLTs…you name it we did it! We were so eager to “fix” this and get her back on track that we kind of lost sight of where we were going and what really was our new reality. As all the babies around us, who were Olivia’s age, far surpassed her, the reality that we weren’t going to fix this set in. The multiple brain malformations resulted in global developmental delays, cerebral palsy, and a limited vocabulary. Our quest for answers as to why this happened were never solved, even with extensive genetic testing. Plus, we weren’t really sure we wanted to know anymore. If it was my genes that caused it, I would feel guilty and if it were my husband’s genes to blame then he would have felt horrible. There just wasn’t a need for us to keep putting Olivia through the testing and we needed to change our mindset from the focus of “why us” to “why not us.”
Together, we made the decision to stop looking for reasons and start moving forward with this new version of their lives and figure it out along the way. At the time of Olivia’s diagnosis, there was very little knowledge of PMG (as there still is) and no social media options to turn to for making connections or gathering information, so they were left with lots of questions and feeling very alone.
We continued to push Olivia in every aspect of her life. Again, the mantra “Let’s just try it and see how it goes” really became the words we lived by. We always advocated for early and continued intervention and pushed for Olivia to try as many things as possible. She began walking when she was 4 with a crocodile walker, started adaptive skiing when she was 5 and stopped using the walker all together by the time she was 6. She can say/sign many single words. She loves to perform ballet in the living room and believes herself to be a master celloist! Her development remains that of a 2–3- year-old, but she continues to work hard and surprise everyone along the way with what she can accomplish.
Olivia has a neurotypical sibling, Gigi, who is 4 years younger than she is. I struggled with the decision to have another child, but we had always wanted a big family. When we decided to have another child we did more testing and still didn’t find any answers. So, we went with the mantra “Let’s just try it and see how it goes.” I can’t imagine our family any other way. Gigi is a great protector, supporter and advocate for her big sister. They fight like sisters, love each other like sisters and I like to think it has made them both better humans!
I wouldn’t say the PMG Journey ever gets easier. It just starts feeling more normal. As she grows and her peers are playing sports, hanging out with friends, and getting their driving permits the grief of her disability sometimes will hit me out of the blue. I have a good cry and sit with those emotions for a bit and know that this cyclical grief is completely normal.
The good days with Olivia far outweigh the bad days and because of her disabilities we have met some amazing people and have created a community of support around her and us. We used to say she was a very bad judge of character because she literally would approach EVERYONE and want to be their friend. But because of this, she opened our eyes to a world we never would have known and brought people into our world that we couldn’t imagine living without. PMG doesn’t define our family, but it certainly has enriched it.
Mom to PMG Warrior Olivia, age 16