COLUMBIA, SC — The message on the front of 10-month-old Kathryn Ann Mullis Thanksgiving onesie says it all: Everyones thankful for me.
Kathryn Ann, the daughter of Colleen and Stephen Mullis of Columbia and sister of 3-year-old Vann, seemed perfectly healthy at birth last spring. But her eight-week exam revealed life-threatening heart problems an enlarged left ventricle, thickened walls and a non-compacted heart.
Medications didnt help. The tiny girl needed a heart transplant. Kathryn Ann was the youngest and smallest patient ever to have a Berlin artificial heart surgically implanted at MUSC while she waited for a donation.
After months of preparation and delays, Kathryn Ann got a new heart Sept. 20. She came home Oct. 24, and in her first week in Columbia went to EdVenture, Boo at the Zoo and the USC-Tennessee football game.
Were so thankful for the doctors, so thankful for the support system we had, so thankful for our friends, so thankful shes such a fighter, said Colleen Mullis.
And the most difficult thank you is reserved for the anonymous family that made the decision to donate the organs of their dying child.
I want to write a letter to the donor family, but its so hard, said Colleen Mullis, who isnt allowed to contact the donor family yet. How do you find the words?
Colleens usually great with words.
If youve got an hour or two and want an emotional boost, go to Kathryn Anns CaringBridge site http://www.caringbridge.org/visit/kathrynannmullis and read the journal entries written by Colleen from start to finish. If you havent already, it will make you want to sign up as an organ donor.
Here are a few excerpts:
May 8 (Kathyrn Anns first day at MUSC): Our first sight of her was shocking a mess of wires and tubing coming from all of her limbs and face. More equipment than seems necessary for one tiny infant. They told us she was on a ventilator to help her breathing, IVs and tubes for feeding and meds, but she was stable. She was running a high fever 102 to 103 but again, she was stable. We had never been so happy to see our little girl.
May 13 (Mothers Day): So my wish came true and I got to hold Kathryn Ann today. It was such a wonderful feeling. And yes, I did finally let Stephen hold her too.
May 23: Kathryn Ann is not doing well. She needs a heart and she needs one NOW! ... In talking to doctors, they did say it is summer and there can be more opportunities to gain a heart during this time of year.
May 28 (Kathryn Ann is the youngest and smallest patient ever to have a Berlin artificial heart surgically implanted at MUSC): We are not out of the woods yet but seem to be walking in that general direction.
June 19: The big news I have to report is the same thing any proud parent would write about Kathryn Ann is teething. I was holding her and she would wake up and wimper and was shoving her whole hand in her mouth (nom nom nom tasty) so we did a mouth check and there sure does appear to be some teeth trying to push through. It is awesome to be able to try to help your child deal with just a normal childhood problem. YEAH!
June 22: After a caffeine jolt this morning, I went back to KAs bedside and read her a book, Love You Forever. Bad idea its like watching a sad movie while pregnant. I teared up every time I read the paragraph, Ill love you forever, Ill like you for always. As long as Im living, my baby youll be. Im sure if people noticed, they wondered why I am tearing up reading a book over my baby who is currently stable. Sometimes it is just tough but thats okay because she is tougher.
July 6 (after Kathryn Ann had to have her artificial heart replaced with a new one): I got to keep her Berlin Heart pump so that she will have a reminder of all that she has been through. Shell be the only one with a Berlin Heart for show and tell. Ha!
Sept. 19: Our news has arrived! It looks like Kathryn Ann will be getting her heart transplant in the wee hours of the morning. The plan right now is to take her back around midnight and start surgery at 4ish.
Sept. 20: Stephen and I just got to see our baby girl for the first time after surgery. I know the tubes, wires and ventilator may look intimidating to most, but we think she looks amazing. She is just our beautiful little girl.
Oct. 9: While we prayed for a heart for all these past months for Kathryn Ann, I came to grips pretty early in the process that I was asking not for another child to die but for a family to have the strength and foresight to see through the grief and make the life-changing choice to do organ donation. I cannot even imagine what a difficult decision this must be for people to make, and I just hope that it provides comfort to these families that through their tragedy, many other lives are saved.
Oct. 22 (as they prepared to head home to Columbia): I tell you I am just so excited about the little things the four of us being in a room together, cooking dinner, sleeping in my own bed. I just cant wait.
Oct. 30: As of 5 p.m. today, Kathryn Ann and I will have been home for one week. It seems like longer than that and shorter all at the same time. There is still a lot of settling to do and things to figure out. Setting up a routine for our new normal is taking more time than I would have thought. Though we are definitely loving being home.