
The Claphan’s
Donation protected
Hi, I am Mady Claphan and my husband Sterling Claphan and this is the story of our sweet Harlei.
I became pregnant with Harlei 3 months after giving birth to her older sister Hunter!
At first my pregnancy was normal until our 18 week anatomy scan showed other wise.
Harlei was measuring 5 weeks behind and I had low amniotic fluid. We were then rushed right to a Perinatal Center for a further extensive ultrasound.
They then noticed Harlei was indeed a baby girl and had fluid on her brain as well as a lower heart rate. The doctor then prepared us for a miscarriage because Harlei was so behind as well as the other factors. She said if we made it to our 24 week appointment we would then do another anatomy scan.
Fast forward to our 24 week scan Harlei had made it! She was still behind but now even more, she was measuring 7 weeks behind. The doctor then had me come in every week to check on her. She then told us to expect her early, she did not want her to go full term for it was dangerous for her due to my extremely low amniotic fluid. They then categorized my pregnancy to IUGR known as Intro-uterine Growth Restriction.
We came in weekly, still measuring the same; we began genetic testing and everything was coming back normal, leaving everyone puzzled at what was going on. Her doctors expected her to come before 32 weeks which we were all frightened due to the fact she was weighing not even a pound yet. Our hearts were sinking every week, just praying she would make it to the next appointment scheduled.
As week 32 approached, Harlei made it! The doctors scheduled for a C-section for 34 weeks because even though she was tiny, she was out of room and my low amniotic fluid was getting dangerous for her. Harlei was weighing a pound and a half and we were just praying she would hold on for as long as she could.
Harlei was born on July 14, 2022 at 34 weeks, weighing 1 pound, 15 ounces and 13 inches long. She measured the size of a 26 week old baby.
Harlei was earth side and the real fight began.
The first month of Harlei’s life endured many extensive genetic testing. Everything was coming back negative or normal and was puzzling all her doctors. Harlei had received almost 3 blood transfusions from all the testing. Our girl was fighting but leaving everyone wondering how/why.
Harlei had a 4 month NICU stay; the main reason for her long stay was the cause of not being able to tolerate her breast milk/formula and grow. Due to Harlei being so tiny, we couldn’t find any nipples small enough to fit her mouth. She was receiving feeds through an NG tube but was finally big enough for a placement of a G-tube. Harlei was then discharge early November weighing just under 4 pounds.
Her life has been full of many challenges. We later learned her hydrocephalus was not indeed hydrocephalus. Her ventricles were formed larger therefore no fluid was being trapped.
Harlei has severe reflux and spits up/ throws up between 2-10 or more times a day. Which exhausts her. Harlei has been labeled as failure to thrive but she does not fit in to that category as doctors tell us. She is thriving, she just isn’t growing.
Harlei turned 1 on July 14, 2023 weighing just under 6 pounds and 18.5 inches long.
She captures the hearts of every person/doctor she meets.
Due to Harlei not growing and her feeding intolerance, our Pediatrician agreed it was time we start getting answers. We have had so many battles with doctors that we decided to start looking for help out of state who would offer us what we need.
Harlei is a medical mystery at the moment and we are ready to get some answers!
We are not sure where this journey will take us but we are hopeful.
Organizer and beneficiary
Ashlyn Morrow
Organizer
Chickasha, OK
Madyson Claphan
Beneficiary