I had the perfect first pregnancy. All the tests during the pregnancy came back normal and I was so thrilled to become a Mommy after so many years of wishing for a baby. When Lahna came into the world she weighed 3 lbs 4 oz and was very sick. She was rushed to the NICU about 20 minutes away from the hospital where I gave birth, and a week later we learned that she had Trisomy 18. Trisomy 18 is considered incompatible with life and we were told that her time on earth was very limited.
Lahna’s Fight BEGINS
Over the next month and 23 days, Mississippi Man and I became Trisomy 18 experts. During the day we would learn what we could about her condition from the NICU doctor and her amazing nurses. Then in the evening we would go home, visit the Trisomy 18 Foundation online, and research everything they had told us to fully understand what was happening. We found doctors who would be willing to do heart surgery on a 5 lb baby with Trisomy 18. The Air Force would separate me in order to care for her full-time. I could care for her. We would find a way to make things work.
We found that Trisomy 18 isn’t always imcompatible with life. The real battle is finding good medical care when the medical community has a history of turning it’s back on “hopeless” cases. Check out Aaron’s story to see a great example of a very happy T18 kid!
At a month and 24 days though, it became evident that she would not have heart surgery. She was still far under 5 lbs, and not a candidate until she made that accomplishment. Even if she were to get heart surgery, she wouldn’t survive. We hated her getting the constant pricks and pins of blood tests while in the NICU and we wanted her to finally come home.
Life At Home with Lahna
We were able to bring Lahna home for 3 days, with the help of hospice. The hospice nurses were incredible and on call for us constantly. Our military supervisors were beyond supportive, and both came to our home to help us and meet Lahna. The outpouring of love from family was more than we could have asked for.
We were constantly making life or death choices for Lahna. How much oxygen she should get? Which medications should she take? Should we feed her, or would that be too taxing for her tiny body to digest? Every day, every hour was a struggle for the three of us. Mississippi Man and I took turns sleeping because Lahna required constant watch of her oxygen levels. In 3 days neither of us slept more than a few hours a night.
August 30th, 2007
On my birthday, August 30th, things weren’t going well for Lahna. Her oxygen levels kept crashing. Although she was in good spirits, she was swelling from her kidneys shutting down. I sat on the couch with her and our dog, Sarge, and sang to her. Mississippi Man said “God, not today, don’t take Lahna today”. He just wanted me to have a birthday with my daughter, who we both loved so incredibly much.
While looking at Lahna I said, “It’s okay if she goes today…it’ll be our special day forever”. I didn’t mean it. I wanted her to live, to keep fighting and surprise all the “experts”. Who was I though to make her feel guilty? I don’t know if babies understand all of that, and I know it seems ridiculous. I just didn’t want to be the reason that God or anything else would make that little girl suffer another day.
Around 6:30 that evening, our supervisors dropped everything and came when we called them. It was time: Lahna was fading quickly, and we needed them there. We didn’t have family in the area, but they were our military family, and we loved each other.
We decided to take Lahna off oxygen around 9 pm. Her kidneys had given out and she couldn’t eat. The hospice nurses were there and willing to help in any way we needed. I took off Lahna’s clothes with the hopes of showing her the nursery we had planned for her and giving her a bath. As I took her into the nursery however, she was already turning blue. I began to shake, handed her to Mississippi Man and we went to sit on the couch in the living room.
Mississippi Man gave me back our baby, and I wrapped her in the softest pink blanket she had. I held her and spoke to her softly, and as I shook, that little girl looked at me and smiled. I smiled back, she took one last breath and closed her eyes. She was gone.
I created this video a few weeks after Lahna passed. It’s not done well, but I was in the midst of a fog of new grief. I like to keep it because other than zooming into odd areas, it’s perfect to me…just like she was.
I am sharing this story with the hopes of helping other mothers. I hate Trisomy 18 and losing a child is by far, the hardest thing I have ever gone through. If you would ever like to talk to me about it please feel free to contact me or comment below.
To Read Part 2 of this series, click below.