Lillian Thompson

Lilly’s Story

“She had the prettiest smile and loved being outdoors and feeling the sun on her face.”

Lillian Thompson, Trisomy 13, 06/13/2015 to 10/24/2015, Coweta, OK

lillyOn February 6, 2015 at our 20 week ultrasound we were told that our baby girl had soft markers for down syndrome. The markers that they saw were echogenic focus, echogenic bowel and a single umbilical artery. We were sent to a specialist who saw the same issues but told us every thing was probably fine and that there was only a 5 to 10 percent chance that she had down syndrome. No one ever mentioned the possibility of trisomy 13. Also they had us do the maternity 21 test. On February 16, 2015 we got the horrible news that our baby had t13 and would not live long if she made it to birth. We were also advised that we could have an abortion. Of course we didn’t want to do that. After that test came back our standard of care seemed to diminish. I loved going to the specialist because we got to see our girl but hated when the doctor came in with all of her negativity.

Anyhow I was set to be induced on June 16 but Lilly had other plans she decided to make her debut on June 13th. She did great through labor. Her heart rate only dropped one time. But she cried and was able to breath on her own.

She had a few issues you could physically see like her extra fingers. Her thin ears and she wasn’t able to open her eyes. We had chose pallative care because of what the drs had told us. I think they thought she would die right away but she didn’t.

They finally released us after four days to go home. Man was that scary.

She was up every two hours and ate 1 to 2 ounces at a time. She did this for the duration of her life.

She did really well up until about 6 weeks old and then she started having tummy trouble. We changed her formula 2 or 3 times and found one that was better.

On August 24, 2015, after Lilly had literally cried for nearly 10 hours non stop we took her to the ER. Her oxygenation was 88 which is low but not terrible. They put her on oxygen which she would stay on until she passed. There they ran a long list of tests and found nothing wrong with her belly. They gave her a feeding tube because they thought she was aspirating (but she wasn’t, she passed her swallow study) and had pneumonia we stayed at the hospital for about 3 weeks while they did tests and gave antibiotics. About 2 days after we were released, Lilly pulled out her feeding tube and started feeding by the bottle again.

She was on hospice and was stuck on oxygen but other than that she did really well for the next month or two. We did have to go back into the hospital for a few days because of pneumonia again but she was released to go back home.

She had the prettiest smile and loved being outdoors and feeling the sun on her face.

On October 24, 2015 I woke up about 3 am to take care of her and let her daddy get some rest. When I took her from him, I noticed her breathing sounded bad. We called hospice and they told us that this was probably it . She passed away in her daddy’s arms later that morning.



Lillian 2