Last weekend I was incredibly blessed by the opportunity to meet a new member of our Squad! When Super Michael was nominated, and I noticed he lived locally, I jumped at the chance to deliver his cape. I was talking to my therapist (let’s be real here…I have a therapist!) and she asked what brings me joy. It didn’t take me long to answer…delivering capes and meeting our TinySuperheroes families brings me SO. MUCH. JOY. So, it was a privilege to deliver Super Michael’s!
We had some additional friends with us. HEC-TV is working on a piece about TinySuperheroes that will feature Super Michael, and his family was so kind to share their story! (I’ll definitely share the link when we have it!)
Super Michael just celebrated his first birthday on April 18! The first birthday is a huge milestone for every family but this celebration is something that Super Michael’s family don’t take lightly – Michael is their miracle!
Super Michael’s mom, Sarah, was so excited when she found out they were pregnant. At a follow-up ultrasound ultrasound on February 18, 2016 (she was about 28 weeks pregnant) their excitement turned to worry when the doctor came in and said “your amniotic fluid is critically low, and I do not see any kidneys in your baby”. Their hearts sank.
Sarah was admitted into the hospital, where she would stay for the next 8 weeks until Super Michael arrived. Further ultrasounds revealed that Michael did indeed have kidneys, but they were severely underdeveloped. Super Michael’s parents were told to prepare for the worst. While it was clear there were going to be difficulties, it wasn’t clear exactly what they would face when Super Michael was born.
At 36 weeks, Super Michael was born via a scheduled C-Section. They weren’t sure he would even breathe on his own at birth…and Super Michael came out screaming! (Much different than the very chill demeanor he seems to have now!) Isn’t it funny how birth is the one time we love to hear a baby scream!
Super Michael was born with VATER syndrome. VATER syndrome is a set of birth defects that often occur together, affecting the Vertebrae, Anus, Trachea, Esophagus and Renal (kidneys). Not everyone diagnosed with VATER syndrome will be affected in all of these areas, but typically in some combination.
Currently Super Michael receives nourishment through a G Tube, has a colostomy bag and has already overcome multiple bowel surgeries. He also has hypo-plastic kidneys, which means they are not fully developed. He produces a normal amount of urine and they control his blood pressure, but he cannot eliminate waste like he should.
Because of his underdeveloped kidneys, Super Michael will be on dialysis until he can be placed on a kidney transplant list. Three times a week, Michael spends 3 hours at a time in the hospital on Dialysis. There are a series of things that need to be completed before Michael will be eligible for a transplant, but they are hopeful he will be ready for his new kidney this year!
Super Michael’s family has certainly learned a lot about the importance of organ donation through this journey, and I will forever be grateful for what they have taught me. Did you know that when a child like Michael needs a kidney transplant, it will likely be from a living donor who is an adult!? Personally while I’ve certainly considered the impact of donating my organs when I die, I never considered being a donor while I am alive! Of course this all becomes a bit more complicated than I’m making it sound here…but I’m so grateful they have opened my eyes to this opportunity to really help people who need it.
Super Michael is a part of COTA (Children’s Organ Transplant Association). This helps his family raise funds to cover the long list of expenses that accompany a transplant. You can view his page and contribute here: http://www.cotaformichaelloganl.com
If you all had the opportunity to hold this bundle of love like I did, you would understand why I feel like this post doesn’t do this TinySuperhero justice. But if you can just trust me…I’m confident Super Michael is going to have an amazing story to tell in the years to come!