“Ashlyn is one loved little girl and I am so grateful to have everyone that follows us whether we know you personally or not.”
Ashlyn Hamer, Trisomy 18; stage 4 Hepatoblastoma, 9/30/2014, St. Louis, MO
Here is a little or ALOT of back ground information about my princess.
Ashlyn was born with trisomy 18, also called Edward’s Syndrome. She was diagnosed at my 20 week ultrasound in May of 2014. I was told she was small, had a cleft lip, and one main artery in my umbilical cord. I had the harmony blood test to confirm the diagnosis but refused the amnio as it wouldn’t change anything for me. My care was immediately different. Dr.s were no longer chatty and positive but rather kind of cold and distant. My genetics counselor was so helpful with providing resources and support because she knew I wanted to fight for Ashlyn. Every appt we came out crying because nothing positive was ever said. Words like abortion, vegetable, still born, and the most common incompatible with life were thrown around each time. Even though she didn’t have any markers for defects on her internal organs, I was told she’d never smile, she’d never walk, she wouldn’t know who I was, she would be in pain her whole life and that’s if she made it through the pregnancy and birth. I didn’t have a baby shower instead talked about burial plans. I didn’t bring a car seat to the hospital because I was told there was no hope she’d come home. I had morning sickness the ENTIRE time, and she moved around like a gymnast. Everyday I wondered when her last kick would be. Every appointment I wondered if they were going to find something new wrong. I made it to 37 weeks and we began to talk about a birth plan and delivery. I was 45 min from the hospital, so they wanted me induced. I had a meeting with my mom and about 15-20 hospital employees each there to discuss my wishes. For the most part they were accommodating. I had chose comfort care because if she wasn’t breathing on her own I didn’t think I could handle extreme measures. I was not allowed to have her monitored because they wouldn’t do anything for her if she became in distress. I was also denied a c section unless I was in danger. The day came for me to be induced at 39 weeks and 4 days. They allowed more than 2 people in my delivery room because we didn’t know how much time we would have. There was at least 10-15 maybe more. When Ashlyn came into the world she was surrounded by many people that loved her. Delivery was pretty quick and easy (thanks to the epidural) haha… She weighed 5 lbs and 1oz. She was 17in long. She cried the most beautiful cry and had eyes open looking very alert. She had the cleft lip and also a cleft palate. She was born with no ear on the right side. She was in the hospital for 4 days no nicu time. There were feeding problems, and they tried to blame it on t18, but I insisted they slow her feeds down. Things turned around after that and she didn’t have anymore breathing episodes. Saturday came, and I was getting to bring my baby home! She failed the carseat test, so she had to use a carseat bed. We brought her home on hospice and full nursing care. She had an ng tube, heart monitor, and oxygen. I had the most amazing hospice nurse that was there for every panic mode, and she treated my baby like her own. We didn’t have any home health help until she was 10 days old. My parents and I took turns being up all night for feeds and watching her. Not knowing when her last breathe would be, we were scared to sleep all at once. Finally, we got a nurse who took over Ashlyn’s care until I moved. Her family became part of our family. Once I found the right pediatrician, I knew I finally had someone that would help make sure she got care. She was off oxygen and the heart monitor after 2 weeks. She came off hospice at 6 months old. I was able to start looking into specialists. Every hospital I called, I was turned down as soon as they heard T18. I was called a monster mom, hung up on, told there was no point and that I should be more worried about spending her last few minutes with her and less about getting her a feeding tube. My mom and I drove to Chicago with her in hopes we had finally found a place to take care of her. She was approved for surgery and all of a sudden they quit answering my calls. They had done research about t18 and decided it wasn’t worth it. I honestly thought my daughter was doomed because no one would even give her a chance. Then came her angel. A momma that has fought like I have. A lady that to this day is very important to me as well as her whole family. I truly believe she saved Ashlyn’s life. She told me to bring her to cardinal Glennon. I did and everything changed. She was scheduled for a gtube. Her cleft lip was gonna be repaired. Not once did they act like she didn’t deserve it. All of her Dr’s treat her as one of their own. In July of 2016 she was diagnosed with stage IV hepatoblastoma, liver cancer. She went through 6 rounds of chemo and had a major surgery in march 2017. They took out her entire right side plus her gall bladder. They injected chemo beads to two smaller tumors on the left side. She has had 7 surgeries, cancer, seizures, over 13 bone fractures, countless mri and CT scans, and still is one of the happiest toddlers I know. She smiles, laughs, rolls over, plays with toys, cops an attitude, loves music and movies, sits unassisted for several minutes at a time, and knows who I am. She loves her puppy sister, knows who her grandparents are and loves to babble and sing. Her favorite shows are my little pony and clifford. She loves disney movies except cinderella. She loves blowing raspberries. Things are not easy being a single mom, but I do whatever I need to for her because I’m her mom. I do not feel I am special, or amazing. I am just doing what I think any mom would do for their child. I am not even half the mom, that my mom is to me. I moved away from most of my support to have her closer to the hospital, but they still find a way to be here. Ashlyn is one loved little girl and I am so grateful to have everyone that follows us whether we know you personally or not. I would not be where I am today without my friends, family, all of Ashlyn’s followers. Because of Ashlyn, I have so many people in my life that I am grateful for. Each one has an important role that has helped Ashlyn get as far as she is, and they are all very special to me. I look forward to sharing our life with you. Ashlyn is my hero and my Rockstar. She deserves to be shown off! 😉 You can follow Ashlyns journey by requesting to join her group Ashlyn’s Trisomy Journey.