Baby Vinny Edward Syndrome Warrior

Update: baby Vincent was born on 4/29 at 34 weeks due to mom having gestational hypertension, and an abnormal blood flow through the umbilical cord. He weighed 3.35lbs and 16.5 inches. He is a strong little fighter! 

Hi my name is Lori Alonzo, and I am setting this gofundme me up for my Sister Robin Melvin. She and her family are faced with a terrible hardship as they found out their baby, my nephew, has Trisomy 18. Trisomy 18 is a very fatal disease, and they have a long road ahead of them. She is currently 24 weeks pregnant. Here is her story in her own words!

 

When I found out I was pregnant I was so excited! Never ever did I think I would be faced with what the outcome would be. On October 9th, 2021 I took a pregnancy test. Not thinking it would say pregnant since we had a miscarriage beforehand. Kevin and Logan went to the store as I was cooking dinner. I decided why not just take a test. So I did, and it turned out positive. I remember sitting there looking at those 2 lines show up in disbelief. So I took another, and another, and another…all were positive. That week I went to the doctor to confirm I was in fact pregnant.

 

I went in for my first ultrasound at 7 weeks, and baby looked great! He was moving around, good strong heart beat, everything looked good. So I continued on being so happy that I finally got my rainbow baby. Kevin and I had already had names picked for a boy and a girl. If it was a boy his name would be Vincent. If a girl her name would be Morgan. We announced it to our families, and close friends, and everyone was really happy for us. Logan finally was being promoted to a big brother and was so excited! We continued going in for our check up’s, and everything was going great.

 

At 11 weeks I went to see Dr. Hering, and was super excited to find out I could do a gender blood test which also tested for birth defects. My mom and I planned to do a gender reveal a month from then as we thought we would have the results in time. Come to find out the blood samples they took weren’t good, and I had to redo the test. So we pushed back the gender reveal. Dr. Hering called me to let me know what the results were. He began to ask if I wanted to know the gender, and I told him no as my mom was the only one to know for the gender reveal. He proceeded to tell me that the blood test showed 21.9% chance that my baby could have trisomy 18 aka Edwards Syndrome. I had a similar situation with Logan. Logan’s blood test came back abnormal for Down syndrome. Turned out Logan did not have Down syndrome at all. Naturally I kept my cool while talking to my doctor, but as soon as we hung up our call I lost it. I cried to Kevin. I cried to my mom. I cried so much! I tried to have faith it was all wrong though, and that my baby will be ok just like Logan was. 

I decided since there was so much going on with the baby, and with it being Christmas time that we would just have a gender reveal with family on Christmas Day. It was actually perfect! My mom got a cute cake that had a rattle inside that said either “It’s a girl!” or “It’s a boy!” on it. Kevin, Logan, and I were able to reveal the gender together. As we pulled the big pink and blue off the cake I looked down and there it was. The rattle that said “It’s a boy” on it! I knew the whole time this baby would be another boy, and you know what?! I was perfectly fine with it!!! The excitement started to sink in knowing I was getting my Baby Vincent as I am absolutely in love with the name. We plan on calling him Vinny for short. 

17 weeks came along, and I go see Dr. Hering. He refers me to fetal medicine for an anatomy ultrasound, and possible amniocentesis. I called and made the appointment to first talk to a Genetic Counselor which was to just the information I needed to know about Edwards Syndrome. Everyone is made up of 23 pairs of chromosomes. Edwards Syndrome is when there is a 3rd copy in the 18th chromosome. It is usually fatal before the baby is even born. Usually ends in miscarriage, or still born. Around 5 in 10 (52.5%) may live longer than 1 week and around 1 in 10 (12.3%) may live longer than 5 years. They are usually born with a lot of birth defects such as: Clenched hands, strawberry shaped head, cleft lip, small in size, heart defects, etc… Reading all of this scared me so much, but I kept thinking my chances from the blood test were low, and usually there are false positives. So I kept hope! About a week after that I went in for the anatomy scan at 18 weeks. The ultrasound tech started off good in the beginning telling me he was looking great! His bladder, lungs, kidneys, and abdomen, all looked perfect. The more she looked the less she talked. After 2 hours of looking, and taking photos she wrapped up the ultrasound. She told us a doctor would be in to tell us what he saw. Dr. Ding came in the room and started telling us the worst news ever. He told us he saw multiple anomalies. His hand was clenched, he head was small, he was small weighing 7 ounces, and he had a heart defect. As he was telling us this both mine and Kevin’s hearts sank. Everything around us went silent, and we felt numb. We walked in with so much hope, and walked out hopeless. I kept myself together as best I could, but I felt so broken. I cried so much! Now we faced the decision that no parent wants to make. Do we continue with the pregnancy, or terminate? We had no idea what to do! I talked to my OB Dr. Hering about 2 week's after that to just sit and ask questions to every option we had which was:

 

1.) Terminate by D&E.

2.) Terminate by induction and delivery.

3.) Go full term, and let nature and God take over.

 

The decision was so hard to make. This baby was so loved the day I found out he was growing inside of me. How could I just get rid of him like that?

 

Kevin and I debated back and forth for a couple weeks. We weighed out all the options, and decided that getting another ultrasound to see if anything has changed would help us make our ultimate decision. So, I contacted the genetic counselor, and she put an order in. Kevin and I went to this ultrasound when I was 21 weeks. About an hour and a half long ultrasound we were told by the tech that he weighed 11 ounces so he was still measuring small. The tech took us to a room where we saw Dr. Huessey. He sat with Kevin and I and told us what he saw. Baby Vincent has a strawberry shaped cerebellum, both hands clenched, small jaw which causes possible airway issues, and heart defect. He talked to us about the options of terminating or continuing, and we had told him we weren’t sure yet. He made sure that we know the time limit is crucial as in the state of Illinois you can only terminate up to 24 weeks. This news was a little easier to hear as we knew what to expect. Kevin and I had a long drive home so took that time to talk about what we were both feeling and thinking as far as continuing or not. We both ended up on the same page to continue on with the pregnancy. We want to meet our boy so we can love on him as much as we can while he is here with us.

 

The reason for us putting our story out there is to raise awareness to Trisomy 18, and to also ask for donations to help our family. The chances of Baby Vincent living is very small. This donation is to help with the amount of traveling we are going to have to do, time off work, medical bills, medical costs, funeral cost when needed, financial help, and whatever else we may need help with. The unknown is scary, and I would like to be as prepared as we can for when he comes. Whatever isn’t used I will make sure is donated to the Trisomy 18 Foundation to try and help find a cure, and also help other families going through this as well.

 

Our family is so grateful and appreciates all of the love and support from everyone. Honestly, this would be so hard without everyone who has been there for us throughout this whole process. One of the hardest parts was making the decision to continue on with this, but now we face the unknown.