Franklin’s Friends
Welcome to the first week of Franklin's Friends. Here, we will meet some families who want to share their experiences with you! They want you to know about their little loves and educate the world too!
In September of 2017, we found out that we were pregnant with our first child. We were beyond excited to be starting our family. We had told our immediate family when I was about 8 weeks along. At 9 1/2 weeks, we had our first ultrasound and we had no idea what to expect. The ultrasound technician showed us the baby, but nothing else. With it being our first time, we thought that it was pretty normal and that there was nothing to worry about.
After she was done she had us wait in the waiting room. She wanted the doctor to look at some of the pictures. I started getting really nervous and I felt something was off. When she came back to get us she took us back into the ultrasound room and gave me the phone. It was my ObGyn on the other line, letting us know that there was no heartbeat.
We were crushed. After going through the miscarriage we tried to get pregnant right away. It took a little bit, but in August of 2018 I found out I was pregnant again. We got an ultrasound right away and there was a heartbeat! We were so relieved and happy. Since they were unsure of due date, because some dates and her size weren’t adding up, I was able to have a couple extra ultrasounds. This allowed us to see the heartbeat throughout the first trimester. About 7-8 months later miss Cora was born. A little earlier than expected at 35 weeks, but she was healthy. When Cora was about 6 months old we started trying to get pregnant again.
Only a couple months later, we found out we were pregnant again. Once again we were so excited. Going through the first trimester is always the worst, not knowing if at some point you will miscarry. My now considered third pregnancy went great. No issues other than being slightly anemic. We made it to our 36 week ultrasound this time and everything still looked great. I went into labor at 38 weeks and had our precious little girl, Avery. She took a trip to the NICU and went on CPAP because, as they put it, she needed a little help getting adjusted to the outside world.
That turned into her not peeing enough and them monitoring her labs. Two days later, they decided that she should be transferred to CHOP (Children's Hospital of Philadelphia) to get further evaluated. To make a long story of ups and downs shorter, after tons of bloodwork and urine samples, they told us she had nephrotic syndrome, was in kidney failure, and that she will most likely need a transplant around the age of two (or whenever she could reach 22lbs). They were hoping to not put her on dialysis yet and wanted to get her kidneys working if they could.
Something extra that I wanted to share. I was curious about kidney transplants in kiddos this tiny. The reason that Avery needed to reach 22lbs, was because kidney transplants come from ADULTS. Tiny little kids get ADULT KIDNEYS.**
They weren’t able to get her kidneys working enough to be able to keep the fluid off. This caused her to have respiratory issues and to be intubated. After that episode she was put on dialysis. Twenty-three days after birth, my baby girl was in life support, being kept alive by multiple machines. Doctors and nurses were always administering medications to her in order to either keep her alive or to keep her comfortable. A week before she passed away, we found out that she had Pierson Syndrome (yes, very crazy that we are the Pearsons and she has Pierson Syndrome).
Next week, I plan to have more information regarding Nephrotic Syndrome and Pierson Syndrome. I am unfamiliar with these syndromes, so I will do the best I can!
This is such a rare genetic disease that not even CHOP has ever seen any cases of it. There are about 40-50 cases of this disease ever reported, but none of that mattered to us. Our goal was to get her to 22lbs, so she could have a kidney transplant and we could figure out all of the other complications that came with the disorder as they came. Most of the babies with this disorder didn’t live past 45 days but we were hopeful that she would beat the odds. As we talked to the genetics doctors and learned more about her syndrome, our hopes of Avery living or having a quality of life were dwindling. We were going to fight for her and with her as long as she was fighting.
Dialysis is not easy on an adult body so for a baby that weighs about 6-7lbs it is brutal. A month and a day after she was born, a week and a half on dialysis, her body didn’t have any fight left.
Avery Rae 8/3/2020 -- 9/4/2020
