Liam is 19 days old now, and he’s doing great here at Helen Devos. We have really been taking each day one at a time, and the medical team has been doing the same. They usually say that Liam will lead the way for his care with what he shows us and how his body responds each day. While the long-term is quite uncertain, we are getting a bit more of an understanding of Liam and what his shorter-term future holds. Currently, he’s quite stable and progressing well.
90% of the Trisomy 13 babies that survive labor don’t make it a year – that’s the statistic we have known since his diagnosis and certainly dreaded. While that reality still looms, what we have learned is that statistic is pulled down pretty heavily by the very very short lives lived, often intersecting with severe physical complications or parental choice on which live-saving or life-extending interventions to pursue or forgo. Of the Trisomy 13 kiddos that make it a year, most will make it to longer milestones like 5 or 10 years. That statistic is skewed upward because most kids that make it a year usually have life-saving or extending interventions that have been utilized to get them to that point already, and they continue to assist life past that point safely.
Liam is fortunate not have physical complications so severe that he couldn’t endure delivery or the first few days of life (which are often heart problems), and we have been supporting him with breathing support as he needs it. The tests and evaluations were quite numerous in the first few days as they were trying to best understand Liam, set baselines, and plans. Now we have gotten to a point with fewer open questions and more monitoring progress of the areas we are working on.
His breathing is the biggest area of focus and monitoring. Apnea is a trademark symptom of Trisomy 13 and Liam has experienced that, along with some other breathing issues. Some of that may be addressed with time and physical growth, and some may require further intervention. Time, further observations, and evaluations will tell and determine our plan. This will certainly need to be addressed before leaving NICU and going home.
Another element being closely monitored is his ability to grow and keep his blood sugar up. He has a feeding tube, and likely will forever. Currently he’s requiring a near-constant drip of food for his body to maintain a healthy blood sugar, and over time we hope to be able to compress that into a quicker cycle closer to a normal feed. This is something that can likely be managed at home, rather than being a condition for discharge.
We have been very encouraged by his progress and are thankful for each minute and each day we get with Liam. He’s been doing great and we are hopeful that continues for the short-to-mid term, which often would indicate long term likelihood for survival. He’s our sweet little guy and we love to love him. We are hoping to be home with him safely sometime between 2-6 weeks from now, but can’t expect anything, as Liam’s future will be quite unpredictable.
Leave a Reply