‘She will save many lives. There are going to be two kids who make it a lot longer because of her.’: Parents urge organ donation after infant loss

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“On April 15th, 2018, we found out we were pregnant with our rainbow baby. At the time, I was only 2.5 of 3 weeks along and in denial that it took 6 tests (even after a blood test confirmed). I also found my progesterone was low due to PCOS! My first trimester consisted of constant monitoring to be sure our little bean stuck. A few weeks into my second trimester, we went to find out the gender of our little miracle. After fighting with our stubborn child, we found out we were having a little girl!

Little boy stands smiling with mouth open beside sign announcing baby sister and ultrasound pictures of her
Krysta Davis

We decided since she was due on December 22nd, 2018 (my Nanna’s birthday), she was going to have my Nanna’s name in her name. After talking for a while, we each picked a name and it was decided she would be called Rylei Arcadia Diane Lovett. Shortly after finding out her gender, I had an appointment to do a quad screen to make sure all was well with our precious little girl. We received the disheartening call a few days later that the screen came back positive for an abnormality in the form of a neural tube defect. When we were told she had a ‘greater than one in five’ chance to have what they suspected was Spina Bifida, we were floored. We were then sent to a specialist in Chattanooga to see what was going on.

I went in expecting to hear she may never walk, but at 18 weeks and 4 days, I found out the situation was much worse-our daughter was diagnosed with Anencephaly, rare, deadly brain disorder where the brain doesn’t full develop. I was in shock. The doctor told me we had two choices; we could either carry her to term or be given medicine to induce labor. Not pleased with those choices, the following day, I went to my regular OB’s office to confirm the news. I was slightly calmer when I was told by the ultrasound technician that the other doctor was correct. The doctor then sat us down and explained we had another option: we could carry to term and donate her organs!

Ultrasound of baby girl with Anencephaly
Krysta Davis
Pregnant woman stands in field with husband whose baby won't fully develop
C. Tilley Photography

For organ donation Rylei needed to be 6 pounds and if she wasn’t born alive they would only be able to donate tissue. We wanted to give parents the option to take the babies home, even if we couldn’t. Pictured is the organ donation packet.

Organ donation packet on table

December 22nd, 2018, we went for our induction. I refused the epidural for a long time. The labor was awful. I wouldn’t dilate, my body wasn’t ready. Each day was worse on the attempts to get my body to labor. The nurses kept trying and even tried Pitocin and manual dilation. STILL, after 48 hours I was not progressing.

Pregnant woman lays in hospital bed holding onto stuffed animal
C. Tilley Photography
Pregnant woman lays asleep in hospital bed
C. Tilley Photography

Finally, on Monday the 24th they broke my water in a last attempt to get this going. If this didn’t work, we were going for a c-section. Sure enough a few hours later my body was doing what it was supposed to. Baby Rylei was on her way!

Woman smiles in hospital bed as she looks at newborn wrapped in blanket
C. Tilley Photography

Doctors were rushing around, calling organ transplant specialists, getting teams ready to send her to surgery for tissue. They told us she wouldn’t survive the birth. BUT SHE DID!

Close up of newborn's face who won't survive and will go to surgery to donate organs
C. Tilley Photography

Then they said once the cord was cut it wouldn’t be long. So, they kept the cord attached for 30 minutes. As long as they could. When it was time to cut the cord, Heather Moore, the Godmother, cut the cord under tear-filled eyes.

Close up of father cutting umbilical chord before newborn passes away
C. Tilley Photography

They were so sure she wouldn’t make it, we had the Chaplin come in and pray over her.

Woman lays in hospital bed with newborn who will die while Chaplin and father stand over her
C. Tilley Photography

She’s still beating all of the odds and I cannot help but be amazed as I look at the little girl lying beside me. She has shown me what true love is in such a short amount of time. The organ donation team were some of our favorite people. The man pictured was the kindest, and most gentle man. He brought in a finger print kit and was able to get her finger print to send off for them to turn it into a silver-plated item for us.

Woman smiles beside man who holds newborn that will soon die
C. Tilley Photography
Doctor smiles as he holds newborn that will soon pass away
C. Tilley Photography

Doctors waited around. They expected her last breath to happen any moment. An hour goes by. A nurse still by my side waiting to call time of death (this was crucial because since she was born alive, they could do live donations and there is a window of 6-12 hours) then a little more time goes by, and the nurse, in complete shock, put a monitor on Rylei’s wrist and said to call her as soon as something happens.

Woman lays in hospital bed with newborn laying on her chest while nurse hooks baby up to monitor
C. Tilley Photography

Then a whole 12 hours goes by. Her vitals were strong. No end in site. Now here we are, Saturday the 29th of December 2018, and Rylei is being discharged to come home with us Wednesday! She’s almost a whole week old and still holding strong. The doctors are shocked. We all are. We were not expecting this.

Sleeping newborn with hat on and pacifier in her mouth who wasn't suppose to survive
C. Tilley Photography

She’s still eating like a champ and her personality is really starting to emerge. If you all could have only seen the mad face I got today when I cut skin-to-skin short because I had to pee. She was giving me the stink eye hardcore.

Newborn who wasn't suppose to survive lays asleep on mother's chest
C. Tilley Photography

After seven magical days, Rylei passed in our arms. She will save many lives. So far we know her valves will be helping someone, and her lungs will too (last I was told lungs will be sent to research, how cool is that?) and her placenta was sent off and the nurse told me that every placenta in this situation matters because one placenta could be the one that tells them the cure or more causes.

There are going to be two kids who make it a lot longer because of her. If I wasn’t able to bring my baby home forever, at least others could.”

Husband and wife lay in hospital bed with their newborn before she passes away
C. Tilley Photography

This story was submitted to Love What Matters by Derek Lovett and Krysta Davis. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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