Winnie : Sweet One

March is Trisomy Awareness Month

By Emily Vinson
Mommy to Winnie
Trisomy 18
Born September 1, 2021

It all started when I had gotten my 10 week NIPT blood test done. It came back 96% positive for the rare genetic disorder, Trisomy18. When my doctor called, she explained that it was a rare disorder, and told me to “just google it.” When we got off of the phone I did, and the first thing that popped up was that “Trisomy 18 is incompatible with life.” I started to sob and called my husband in there and he started to cry with me. We didn’t know what it really meant, we were very unsure of the outcome.

So, we waited until the 20-week anatomy scan hoping for some answers. The anatomy scan did confirm the diagnosis of Trisomy 18. It showed multiple defects. After the ultrasound, we had a long discussion with the maternal-fetal medicine doctor. He basically straight up told us that she wouldn’t have a quality life and that we should really be thinking about abortion because it would be easier to just try again later. The doctor tried to tell me to expect the worst. He said that she might not even carry to term, or that she could be stillborn. That if she did make it that it probably wouldn’t be for long. He said he would absolutely not do any kind of medical interventions or even attempt to try and save her life, and that I should just give her to God.

All of that was extremely hurtful to hear but a part of me still had hope. So we walked out of that doctor’s office and never went back there. I started researching different options and different hospitals and groups of other people that have children with the same diagnosis. I found multiple people who had children that were still living and thriving with Trisomy 18. Yeah, they all have their own hurdles to go through but that gave me a lot of reassurance and hope that my daughter could be that 1 in 10 to make it to her first birthday.

I found out that Cardinal Glennon, which was 2.5 hours away from us, was a Trisomy friendly hospital, so I talked with my normal OB and got a referral to go up there. I was 28 weeks pregnant when I went to my first appointment there. I am so thankful that I found them and that they were so willing to do medical interventions for my little girl. They weren’t willing to just give up on her.

We found out about On Angels’ Wings from the footprints team at Cardinal Glennon when I was in my third trimester. The first photoshoot we did was a maternity one and it turned out beautiful.

The doctors wanted to deliver Winnie at 37 weeks because there was a problem with my placenta and her not getting enough nutrients like she should’ve, it’s called IUGR. So I went in on September 1, 2021 for a scheduled c-section, fully expecting to just prep for surgery and get everything over with. But the doctor tried to then convince me to attempt induction and to have her vaginally, because she thought it would be easier on my body and my other two kiddos were vaginal births. So, I got the epidural and they did a successful ECV, but her heart rate started dropping so they had to rush me to do an emergency c-section anyway.

When Winnie first came out she looked lifeless but they put her in a different room beside us, suctioned her out and got her breathing. They actually then thought she was doing so well that she could just go to their NICU for the time being. Before I even went in to have her, my/her team at Cardinal Glennon said that she would be immediately transferred there after birth, so that’s what I thought would happen initially, but thankfully god was watching over her and she wasn’t showing signs of distress or anything.

She was actually doing so well that she got to stay in the St. Mary’s NICU for four days while I recovered in the hospital, and I got to visit her frequently. After those four days she had to be transferred to Cardinal Glennon because we had a Necrotizing enterocolitis scare (disease of the intestinal tract). They told us she had no gas in her belly or bowels so that was very concerning and they thought they might have to do a big emergency surgery to fix it. The same day they transferred her, we got discharged from St Mary’s and we were so terrified. We noticed a Jesus statue outside before we left St. Mary’s, stopped at it and prayed. We didn’t care if we looked silly in front of everyone walking in and out, we were in a very sad and nervous state and we just wanted Winnie to be okay.

About 45 minutes later we got to Cardinal Glennon and the doctors came in to talk to us and said that they had just took another X-ray, reviewed it and it was fine. They thought it was very odd, it was like gas magically appeared! We felt like our good Lord performed a miracle!

Winnie was in the NICU at Cardinal Glennon for 48 days before she got to come home for the first time. It’s definitely not been a normal family dynamic. It’s sometimes physically and emotionally exhausting because Winnie has been in and out of the hospital since she was born. We have to be super careful with germs and try to prevent sicknesses from getting in the house if we can, but sometimes that feels impossible. We have therapists coming to our house at least two days a week, because Winnie requires literally all the therapies.

Me and my husband are full time parents, we cannot work because Winnie has been in and out of the hospital so much and one of us has to be there with her while the other stays with our other kiddos. When Winnie is at home, we have to keep a close eye on her because when she does start to go downhill, she goes pretty fast and one time we even had to do CPR to bring her back to life.

Despite the scary moments, Winnie is definitely growing bigger and getting stronger. We just need to keep the sicknesses from getting to her because that’s our biggest problem at the moment. Her big brother goes to public school and brings sicknesses home every month and that’s why she’s been having to go back to the hospital month after month. We are fixing to pull him out of public school and try homeschooling for a little while to see if it will help. It’s not exactly ideal for him, but it literally feels like our last resort. We don’t know what else we can possibly do.

I pray that my beautiful little girl will be able to stay out of the hospital and get stronger so we can go out and have her experience things with us as a family of six. We want her to thrive and we want to make her as happy as she can be. Quality of life for her is very important to us. I also want her to be able to hit therapy hard. Eventually, I hope she will be able to sit up on her own and maybe walk one day, even if she has to have some kind of contraption to help.

I am forever grateful of every photo On Angels’ Wings has taken for our family thus far. Now they continue to be on this whole journey with our little miss Winnie. We feel so very fortunate to have them in our lives. On Angels’ Wings have helped us capture sweet memories that we will forever cherish!

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