My name is Michael Naglieri and I am the proud grand dad of Karlee Rose Naglieri. Karlee was born in 2012 with Hyperplasic right heart syndrome, pulmonary stenosis, and tricuspid valve atresia.
We were made aware something was seriously wrong with her heart just days before she was due. The day my daughter in law went into labor, we all waited patiently to see Karlee and her condition. After nearly 12 hours, we were relieved she survived the birth but had to be quickly transported to Brenner's Children's Hospital in NC for Critical Heart Care.
We never had a family member with such a serious problem at birth and did not know what to expect. Doctors were going in and out of the NICU and most of the info went directly to my son Michael and his wife. They provided the info as it was diagnosed and the course of action for Karlee's care by priority.
Karlee had 3 major heart defects that were corrected individually by the cardiac team at Brenner's but never all on the same child at the same time. This was devastating to hear and even worse to realize when we saw Karlee hooked up with life support tubes all over her. We put all our faith in God and were comforted by family and friends as we prepared for her first open heart surgery.
Michael and Anita live 30 miles from Brenner's but they took turns day and night, never leaving Karlee's side. Michael and Anita have 3 other children that were being cared for by Anita's parents and it took a toll on them all. How do you explain your new sister is in such dire straits?
Full blown open heart surgery was required and a partial repair was performed to direct blood to get the most oxygen possible but another surgery was going to be required when this fix was not going to be enough to support her tiny body.
The surgeons checked in every hour as the surgery progressed and she made it through with good results. We went to see her after surgery and that is when we all broke down. Tubes, drain lines, monitor leads and a large clear bandage still over her open chest where you could see her heart struggling to beat as the intubation machine kept her breathing.
There is nothing worse than seeing your innocent child fighting for life and in a condition like this.
We were so happy she survived and things looked promising till her oxygen level dropped as she was taken off the intubation. After several days, it was discovered that her diaphragm was cut by accident and she was sent back to surgery. Wow, not again.
Things went pretty well until she was released to come home and she was discharged with a pulsox and O2. She had trouble eating and it was obvious she had another problem with her O2 and something else. While back in Brenner's, they found her gall bladder was damaged from the medications and her diaphragm was too loose and needed to be operated on again. This was just unbelievable. It seemed like there was no end to this string of surgeries and frustration was very tough to deal with for all of us.
Luckily, Karlee had fought her way through and made good progress after that.
We got to know Karlee as a sweet, smart and loving child who hated to be tethered by her oxygen tubes and wanted to be like everyone else. This was our miracle child and we wanted nothing else to hurt her.
Many trips to the ER at Brenner's were ahead and waiting for just how long it would take for her heart to require another surgery.
That day came early in 2013. Her oxygen was just not enough to keep her going and the options were to fix the heart in another surgery or shut off half her heart and live the best quality life possible.
My wife Susan had been caring for Karlee while her parents worked and they became best friends. I could not believe how much she enjoyed life and her strong will to be like other kids, play with the dogs and swing on our backyard swing set. The smile she had on these swings while listening to Lilo and Stitch was priceless and no matter what was going on, that smile was all that mattered.
This surgery was harder than the last one because Karlee was a person now. She knows us, we understand her likes and fears and we would all take her place to prevent her from another open heart surgery.
The surgery was completed and the surgeon came out afterward with a big smile....I will never forget it. He and his team fixed her heart and it appeared to be holding...A miracle.
Karlee has had many complications from her many hospitalizations and spine issues that will be dealt with as they become necessary.
She recently had all but 4 top teeth pulled in surgery from the medication she was on. Her heart needs constant monitoring as does her pulsox.
She does not talk but therapy has her signing. Can you imagine? She is caught every once in a while singing quietly to her favorite cartoon and does a great Da Da and Momma but not necessarily in the correct sequence. I am working hard on getting her to say Pop Pop and I think I am close. Doctors say she will eventually speak more fluently as time passes and at school age, possibly making some kind of denture to wear.
Our friends, family, beliefs in God and Mended Hearts group have been there for Michael and Anita through this life changing experience but the costs have been high both emotionally and on their wallet. Michael and Anita drive combined 120 miles a day to support their family and still have debts from the trips to the hospitals, doctors and procedures that will be continuing to build on their already unbearable debts.
Karlee needs continuing care as other issues arise and if in any way you can help her and her family improves quality of life for her and her family, it would be a wonderful thing. Thank You.
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