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My daughter Kate was born full term on April 29 and was deemed at that time “perfectly healthy.” Within a week, they heard a murmur and we were told she had a small VSD that may present itself in minor ways in the coming months but more than likely, it would heal itself and she may need antibiotics at the dentist when she got older. Within weeks, she was in complete heart failure and dropped almost 2 lbs. below her birthweight. It was a huge VSD and they suspected a syndrome although we didn’t know which one. She was on a feeding tube for two weeks while she got cleared for surgery at Columbia in NYC. She successfully was repaired with an innovtive patch called Cormatrix but they detected she had no thymus gland when perfoming surgery. Days after, the genetic FSH test came back confirming the microdeletion. I cannot tell you how much this experience has changed our lives and we do feel very blessed that her issues thus far, seem to be on the low end of the spectrum. She has no hearing, sight issues, no cleft issues, no kidney or GI issues, only the VSD which has been completely fixed at this point. She has several hemagiomas on the left side of her head and neck which she recently received a neck and brain MRI for. They were concerned of brain stroke potential but I am happy to say, she has been cleared of that as well. She has no feeding issues since surgery and she is now over 16 lbs. (gained more than double her weight since June). She is truly amazing. As all of you who are going through this know, the hardest part is the “not knowing” what lies ahead. We have started early intervention not knowing what her mental issues may be but so far, they have said she is cognitively on track. Time will tell. Her biggest health issue now is her immune system since they didn’t see a thymus but she has the parathyroid gland so they think she may have thymus hidden somewhere. My heart breaks for anyone with babies and children with health issues. I have always thought myself to be an empathetic person but now it is at a whole new level. I want to do something to help people who are at the beginning stages of this journey. While my journey is still relatively new I feel like a lifetime has past and I have a lot of advice, listening and hope to share. Let me know what I can do. Kate the Great is going to surprise us all. I just know it.

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