Texas family's email exchanges highlight hope in Christ after infant daughter's death

By Nate Sharp

For Aggieland Mormons

Published: Monday, June 9 2014 10:00 a.m. MDT

Updated: Wednesday, June 11 2014 9:22 a.m. MDT

It's been really hard hearing people at the hospital say they are sorry about our baby or feel bad about her. They are just trying to be nice, but you never want to be the one family on the floor that has the baby everyone feels sorry about. We never thought it would be us, but here we are.

I gave her a blessing in the NICU last night and we feel at peace that our family will be fine, and we will be blessed to have her in our home. I'll probably call you later this week once we have more information.

Kate3

Tuesday, June 8, 11:27 a.m.

Email to family and friends

We're now here at the NICU at Texas Children's Hospital in Houston. We are not allowed to use cell phones in the NICU, so using this email address is going to be the best way to keep in touch.

They have not operated on Kate yet, and we are finding out that the operation will probably be delayed until later this week or even next week. Besides the aortic coarctation that they know she needs surgery for, Dr. Ayers told us she can see a few other things with her heart that are a little concerning.

Kate is very stable right now, breathing on her own without oxygen. We obviously have full faith in the team of doctors here and appreciate how considerate they are of us and our concerns. We will meet again later this afternoon with her cardiologist after they've had a chance to review all the images of her heart. The hope is that by the end of the day, they'll at least know about when the surgery will likely take place.

We will send updates as we find out more information each day. We appreciate the prayers and support on Kate’s behalf and ours.

Wednesday, June 9, 4:33 p.m.

Email to family and friends

Two different geneticists met with us yesterday, and both examined Kate to try to figure out what's happening. One of them drew a visual family tree of both of our families that would have impressed any ward family history consultant. We should have asked to get a copy for posterity!

Although they won't know until the results start coming back tomorrow, they are still leaning toward Turner syndrome. They have noted, however, that Kate has some symptoms that are not usually characteristic of Turner's; and she is also missing a few of the typical Turner's symptoms. So it could be anything.

Kate4

Thursday, June 10, 10:10 p.m.

Email to family and friends

Today has been very tough. We knew it would not be good news when the neonatologist told us this afternoon that we needed to sit down before hearing what the chromosome tests had found. As it turns out, Kate does not have Turner syndrome. Instead, she has a much more serious condition called Trisomy 18.

We met first with the neonatologists, followed by a meeting with all of Kate's doctors: the geneticists, the cardiologist and the neonatologists. We were very blessed that Bishop Haymond, the endocrinologist with whom we've been staying, was able to race over to the NICU in time to actually attend the meeting of all the doctors with us. It was so nice to have him there to hear everything and help us process things after the other doctors left. We had the opportunity during that meeting to ask all our questions about Kate and her condition.

Trisomy 18 has a much different prognosis than Turner syndrome. Nearly all infants born with Trisomy 18 die within one to six months. The list of complications is enormous. As a result, the surgery Kate needed for her heart is now not an option. Because Kate has her heart defect, the doctors believe it is likely that once they take her off the medicine that is keeping her heart working, she could pass away within days or weeks or maybe months.

We are praying for comfort and direction from heaven, and we are so grateful to know that no matter what happens, Kate is ours forever. She is our little angel.

Kate5

Friday, June 11, 7:45 p.m.

Email to family and friends

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