‘Something was terribly wrong. She wasn’t crying. ‘Your girl is very sick.’: Mom loses 19-day-old baby to Trisomy 13, ‘God will turn these ashes into beauty’

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“March 2021 was supposed to be one of my happiest months of the year. My second child’s due date was the 9th of March, and my husband and I were so excited. I had a wonderful, easy pregnancy. We had our first baby (a boy) in 2019, and now he was getting a sister—what a blessing. We had everything ready for her: her stroller, lots of beautiful clothes, her room was half set. We asked my sister to be the godmother and a good friend of ours to be the godfather. We felt very ready for this little miracle to come.

Wednesday morning, 6 days before our baby’s due date, I got a phone call my best friend and her husband (soon-to-be godfather to our newborn) died in a tragic accident in the mountains. I literally broke down next to my 2-year-old son and couldn’t believe what I just heard. What devastating news. I called my parents to ask if they could look after my boy for the day so I could have some time for myself. I sobbed the whole day and didn’t know how I could ever be ready to give birth in the next week. I was so sad.

This new life just about to be born and the death of such a young couple were way too close for me to handle. I knew I had to go through this, and believed strongly God would help me and give me peace and strength. My baby girl’s due date was coming up closer, and I had hardly slept after this tragic loss. On Sunday, March 7, around midday, my water broke and contractions started. My husband and I went to the hospital. Everything went pretty fast. After about 3 and a half hours, the doctor told me, ‘Just one more push.’ I was so excited to finally meet our girl. I pushed! And here she was—our beautiful baby Lou. I held her close, but something seemed terribly wrong.

Courtesy of Sarah Gauthey

She wasn’t crying the way babies normally do when they come out. My doctor grabbed her from my hands and took her to the side to have a look at her. She came back to my husband and me, held us close, and told us, ‘Your girl is very sick. I don’t know what’s wrong, but we have to examine her and take her away to another hospital.’ Shortly after, they left with my precious baby.

I was devastated. I couldn’t believe what was happening, and the aching pain of her being taken away from me was so deep I could hardly handle it. We had no idea what this all meant. Will she survive, will everything just be a bad mistake, will she live with a strong disability? We had to stay in the hospital I gave birth to her in for the night. I actually even slept a bit!

Phil Wenger Photography

The next day, my husband and I left the hospital to go to Lou. She was in the NICU. And this is where we ended up staying for 3 days. They did lots of tests on her, and she seemed to be pretty stable, but it was obvious she had a disability because of an open head wound, a heart problem, and some other things. After 3 days, we got the news. Our girl had Trisomy 13, and we knew NOTHING during the pregnancy, even though we had various tests done. Her life expectancy was very short. It actually was a miracle she already made it this far. This somehow didn’t shock me. I already told my husband I guessed it would be Trisomy 13, and I really felt like God had prepared me for this somehow.

Courtesy of Sarah Gauthey

It felt like we were in the most horrible and most holy season of our lives. Suddenly, we were the family with the sick child—what I/we never ever wanted to be. No one could tell us how long she would live. Maybe just a few more hours, maybe some weeks, months, years… we had no idea. We were forced to ‘enjoy’ THE MOMENT and not think about tomorrow. But at the same time, we were making decisions for the next weeks, so it was really hard to live in the now. But we loved her more than words could say. Her body was sick, but her spirit was complete and filled with the power that raised Jesus from the dead, and her soul was alive. She was perfectly and wonderfully made, and we knew one day she would be made completely whole.

Phil Wenger Photography

I didn’t know of any baby who was loved and cuddled as much as she was in her first week. It was a great honor to be her mommy. She was a gift—a challenging gift. One I probably wouldn’t have chosen, but God did. So if God trusted her life into my hands, I knew I want to give my very best. But in all this love that was flowing, I was in deep pain and felt forgotten by God and very angry at him. Why would he let this happen?! Why should I go through so much hardship in such a short time?! Every day in the hospital, we had multiple meetings with doctors to see what operations should be done.

Courtesy of Sarah Gauthey

After a lot of thinking, praying, and crying, we decided not to have any operations performed on her and to take her home as soon as possible, so we could hopefully have some months with her and enjoy her as long as she was here. The doctors supported us and were glad we made this decision. They told us with children like her, it can happen they die during the operation. This would have been very hard for me. So, after one and a half weeks, we went home with our beauty. Like I mentioned above, we were in the NICU for 3 days and then we moved to another department.

Courtesy of Sarah Gauthey

We enjoyed being back home with our son, but life was everything else but normal. I was crying every day. I felt so overwhelmed by this situation, and it was so hard to live in the tension between life and death every second. There were nursing staff coming every day for 2 hours and every night to watch our girl. It felt like a big mess and a totally new life I would have to get used to. It was Thursday evening when Lou began to get restless. She was always such a peaceful girl but that evening, I couldn’t get her to sleep. She was crying a lot. Something felt terribly different. But as I was pretty sure she would live for at least a couple of months (doctors were even saying some years), I wasn’t thinking of her dying at all.

Phil Wenger Photography

That night, we didn’t have any nursing staff, and after an hour of walking around with her in my arms, we both finally fell asleep. The next morning I texted my family to come by—I guess I felt she wouldn’t be with us for much longer. Then, that morning at 10:30 a.m., she died in my arms. I felt it. I was sitting on the floor and told my husband to come closer and hug me. I told him, ‘She’s going to die soon,’—and then just a couple of seconds later she took her last breath. We even have a photo from this moment. My sister was there, and a photographer friend of ours who took the shot. This photo is so so valuable to me. Lou died after being with us for 19 days. Once again we were shocked.

Phil Wenger Photography

I lost my very close friend and her husband at the beginning of March, and only 28 days later, my precious baby girl. March 2021 was the worst month of my life. Looking back, only one month later, I still can hardly believe it. And at the same time, I am so thankful to God for how he has been with me in all of the pain. Shortly after baby Lou was buried, I told God I never ever want to hear anyone say to me, ‘You are a strong woman.’ I would much prefer to have my baby and friend back and be like most of the happy families around me than be a strong woman. Having the title ‘strong’ didn’t measure up to the cost. So I was very tempted to stay in my deep and dark valley than let God take me on a journey of hope and healing.

Phil Wenger Photography

I do believe the dark valley is really important in a situation like this. It’s not healthy to pretend everything is fine, and God is good even though you don’t feel it at all. I was so, so real with God. I told him everything I felt toward him. I went for car drives and SCREAMED because I felt so much bitterness and anger. But somehow in being real with God and ‘letting it out,’ he could touch me and he is restoring my heart bit by bit. I miss Lou incredibly. I still find it utterly unfair I have to go through so much at the moment—but life isn’t fair. And God will reward! He promised he would and he never lies. He said he will turn ashes into beauty.

Phil Wenger Photography

In her book Wholeness: Changing How We Think About Healing by Christy Wimber, she says, ‘The thing that is so powerful about scar tissue is that it is stronger than the original flesh ever was. The deeper the scar, the greater the strength.’ At the moment I think my story is still an open wound. I still need time to process and let the wound heal. I will always miss Lou—this will never change. But I believe the bitter pain will change into a pain that is way more bearable and is a sign of love. And I guess there’s no way around it, March 2021 will make me a strong woman because the scar will be DEEEEP.”

Phil Wenger Photography

This story was submitted toLove What Mattersby Sarah Gauthey of Switzerland. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘The doctor came in, and instantly, the room felt off. ‘I’m surprised your baby made it this far.’ I felt like I blacked out.’: After multiple miscarriages, mom gives birth to baby with Trisomy 13, ‘To us, he was perfect’

‘He wanted me to get a second opinion. ‘Things like this don’t happen to people your age.’ All the findings from the ultrasound lined up.’: Mom spends 19 hours with son with Trisomy 13, ‘We can learn to celebrate every moment’ 

‘She looks at her like she holds all of the secrets to the world. She had a 10% chance of making it. I begged God for time together.’: Woman births baby with Trisomy 18, ‘I never believed in soulmates until then’

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