I’m a mess today. We met a wonderful little boy named Max while we were in the hospital (Actually Carrie met his mom on an internet site before Gracie was even born – both looking for answers). Max is around 6 months old and has some similarities to Gracie. Max also has Down syndrome as well as a major heart issue. It’s not super rare to have Down syndrome and there are many instances where typical children have one side of their heart that is not adequate, but to have a combination of these two is extremely rare and very serious because kids with Down syndrome don’t traditionally do well when treated the way they would treat a typical kid. That said, Gracie’s first surgery was the Norwood Procedure – the first of the three phase surgeries that they would do to fix her heart if she were a typical kid. The Down syndrome adds complexity – so much that the outcome is usually fatal. There are many common heart issues that kids with Down syndrome are prone to – Gracie and Max don’t have the exact same issues, but the issues that they do have with their hearts are not the common ones. They are very rare and very serious and we both, along the way, have been given very little chance of our babies making it. Kids with Ds and hearts like these typically have not survived – I told the surgeon that did Gracie’s heart surgery when they presented the risks to us – “she will survive and someday you can write a paper about it”.
OK, back to Max. Max had the band surgery that we were first told that Gracie would have – he had it a short time before she was born. We followed each other around the cardiac floor of Children’s hospital in Minneapolis. Carrie and his mom, Nikki bonded only as two mothers with babies like this could and the last couple of days there, the kids rooms were right next to each other. Gracie got to go home for Christmas to get strong and prepare for her next surgery in the not too distant future. A few days after we left, Max was flown to Boston to prepare for an operation done by the world renowned Dr Pedro Del Nido. This surgery will result in Max having a four chamber heart – Kids that have had this procedure are very rare – it’s a very small group. I just know he is going to be OK and I pray that Gracie will be able to soon follow them to Boston and also have a successful 4 chamber heart surgery. This is not your standard removing of the tonsils – this is some cutting edge trail-blazing stuff that only this Dr is capable of at this point. I find myself remembering how I felt when they wheeled her back the day of her open heart surgery – I cannot stop thinking about this little boy and his family. I just know that these two are here for a reason and met for a reason and are destined for great things. I pray that Dr Del Nido works as perfect today as he ever has and that we can look back at this time as a time that made everyone stronger and what was needed to happen so Max can live the long life that he is destined to have. And I pray that in the not too distant future, Gracie will too be part of the four chamber heart club
The procedure has just started as I type this – please keep Max in your thoughts