Delilah’s Story


On July 21st 2022, a miracle baby named Delilah Elizabeth Jarrell was born. She was born prematurely and was born with Spinal Bifida and immediately had to go into surgery to close up her back and also put a shunt in her head due to her head having so much fluid built up. With those surgeries the doctors explained she had a condition called Myelomeningocele. This tiny little baby was already such a warrior undergoing 2 major surgeries. She was able to recover well from those surgeries, during her recovering time the doctors had explained to us all of her issues that were also going on.

She had a large VSD in her bottom right chamber of her heart, due to her being so young and having already had 2 major surgeries the doctors wanted to wait till she was about 4-6 months old before undergoing this surgery. Her lungs and other organs were pushed up so far up she could not breathe on her own and she had to use a CPAP. With everyday we would work on lowering her PEEP pressure to try to get on oxygen. The doctors had explained to us they cannot send her home on a CPAP (unless it was absolutely the only way) but we could have her some on oxygen. We were able to try oxygen 3 times. The first time she handled it for about a week, then one day she decided she did not like it and wanted that extra help, so she went back on her CPAP. The second time she lasted about 2 days then wanted back on her CPAP, then the last day she only lasted 2 hours until we put her back on her CPAP. A month after she was born the doctor and social worker came in the room and told me that my sweet baby has Trisomy 18. I had never heard of it, but I’ll never forget the words that were said to me. “Trisomy 18 has no cure, normally babies with this condition do not live a long live.” Those words broke me, I started crying and my husband was just in complete shock. The doctors and nurses were so kind to us, they always made sure our angel was comfortable and never in any pain.

All her characteristics fell into Trisomy 18. Her Spinal Bifida, Myelomeningocele, VSD, her organs being so close together, her “clinched hands and rocker bottom feet”, along with other things. Our goal was to get her home to be able to live her life with her family until it was Gods turn to have her back home. They suggested we do a CPAM surgery which was to remove her bottom part of her lung (due to having a small cyst) and moving her diaphragm down so she can breathe on her own. All surgeries have risks, regardless of what it is but we knew this was one of the things we needed to do to try to get her home.

On November 1st, 2022, she went through with her surgery. She was gone for about 4 hours and those were the most stressful 4 hours of my life. We finally got a call to come down to talk to the surgeon, he explained to us that he was happy with the results, but they were not able to do all of what they wanted to do. They removed the cyst and moved half of the diaphragm. Trisomy babies do not do well under anesthesia, so with that being said the doctor had explain that her vitals would start to go down, so they would have to stop wait till she was stable then try again to work on her.For 7 days she was okay, she was having good vitals and starting to recover but on the 8 day her oxygen dropped, they had to bag her and asked a family member who was there if she wanted to hold her because they were thinking she wasn’t going to make it. We lived 2 hours away from the hospital and when my family member called me, my husband and I rushed there. We were halfway there, and the doctor called to tell us that she was holding on and waiting for us and I drove as fast as I could. When we got there, she seemed to be doing okay. Her vitals were going up and her numbers were looking better.

On day 14 she coded again, and they had to once again bag her. The doctors at that point sat my husband and I down and explained that she should be recovering at this point but instead was going the opposite direction. They told my husband that they can keep her comfortable and do everything for her or we could take out her vent tube but if we did that she would more than likely pass. They explained her Vent was hurting her more than helping her and on November 15th our family members came to say goodbye to her and at 8:52 we pulled out her tube and at 10:54 she passed.

I cannot describe how hard it is losing a child. We had 117 days with her, and they were filled with love and care. I miss her every day. I miss her little noises and her beautiful eyes. She was the most beautiful baby I have ever laid my eyes on. Her story will forever live on, and she will always have a special place in everyone’s heart. It helps to know that she is free and not hooked up to any machines and can be with our family members up in heaven.

Thank you for reading our little girls story!

Would you like to make a donation in memory of this child?