Stefanie W’s Story

My husband and I got married when we were 33 and 37, and we wondered if we would face fertility issues because of our ages. However, I found out I was pregnant in May 2017 soon after we started trying to conceive.

We were following the traditional “Don’t tell anyone until you reach 12 weeks”, but I was excited to be pregnant at the same time as a couple of my coworkers and due just a few weeks later than them. I remember sitting at our kitchen table eating breakfast one morning when I was 7 and a half weeks pregnant thinking that life was perfect, and wondering what was inevitably going to happen to shatter my little bubble of happiness.

That morning, I was rear ended on my way to work and my car was pushed into the car in front of me. Luckily, the damage was minor and I wasn’t hurt, but my coworkers kept encouraging me to go to the ER just to get checked out. That afternoon, I noticed some slight spotting and decided to go to the ER to be checked out and reassured that everything was OK.

The ultrasound tech in the ER turned the screen away and didn’t say anything. I worried but assumed that was normal. The ER doctor eventually came in and said the gestational sac was measuring behind at 5 weeks 4 days and was shaped “like a comma”. But, he said my cervix was closed and that it was not a miscarriage but a “threatened abortion.” He sent the ultrasound report to the midwives, who called me and said that the misshapen gestational sac was a big concern and I was likely miscarrying, and ordered serial HCG blood tests. My HCG was lower than it was supposed to be.

A couple days later, I was at work when one of the midwives called and said “Your HCG is going up, you might still be pregnant.” I went to the bathroom shortly after the call though, and saw a lot of blood and knew I was losing the pregnancy. The next day I began having contractions at home and miscarried.

I was devastated, but told myself that miscarriage was common and it was unlikely to happen again. My husband had made a pregnancy announcement video to send our families, but instead, we had to call them to let them know I had had a miscarriage. Being at work around my pregnant coworkers was hard. Many people reached out to tell me they had had miscarriages, but they all had living children too, and so hearing their stories made me feel even more alone.

We waited a month before trying again, as instructed. I got pregnant right away and this time I told a couple of friends immediately because I felt that it couldn’t possibly happen again, and if it did I would need a lot of support so people might as well know. I ended up having an early miscarriage/chemical pregnancy about a week later at 5 weeks pregnant. I worried that we would never have a successful pregnancy, and I felt even more alone since it seemed no one I knew had had multiple pregnancy losses. I found an Instagram account about miscarriage though, and it helped a lot to read stories from other people who were going through the same thing.

I soon found out I was pregnant again. By this time, I just showed the positive pregnancy test to my husband and cried without saying anything, and he shrugged and said, “Well, we’ll see what happens.” The pregnancy was slightly complicated by mild gestational hypertension, but that baby was born healthy in May 2018. We had not found out the gender so we had two names picked – Henry for a boy, and Iris (which means rainbow, for our rainbow baby) for a girl. The baby turned out to be a boy.

We wanted two children and we wanted them 2 to 3 years apart, so we started trying to conceive again a few months after Henry turned a year old, and found out I was pregnant shortly after. Things seemed perfect again. In January 2020, we went for a midpregnancy ultrasound. The ultrasound tech took a lot of pictures of the baby’s heart and didn’t say much, and they made us move to another room after the scan. I knew that meant they had found something wrong, but I assured myself it was probably something relatively minor.

However, the maternal-fetal medicine specialist told us that the baby had a serious congenital heart defect – double outlet right ventricle (DORV). She also told us it was a girl, who we immediately named Iris. We were referred for an amniocentesis and fetal echocardiogram. We learned the baby had normal chromosomes and had multiple complex heart defects including DORV, a VSD (hole between the chambers of her heart), and small left-sided structures or Shone’s Complex. We prepared to spend Iris’s first weeks or months at the hospital while she had at least one heart surgery, and decided to temporarily move across the country so that family could watch our older son so my husband and I could spend time at the hospital.

We were scheduled to fly cross country around April 1st, 2020, but Covid hit and so we left on short notice a couple weeks before that so we could quarantine upon arrival. Iris was born a few weeks later and was transferred a few hours after birth to the cardiac ICU at the local children’s hospital. Her heart function was good initially, though there were concerns because she also had a cleft palate and severe obstructive sleep apnea. We decided to have a full exome sequencing done to see if she had a genetic syndrome that wouldn’t have been tested for on the amniocentesis.

Iris was discharged home at 19 days old and spent a wonderful 25 days at home with her big brother, parents, and grandparents before being readmitted for heart failure symptoms. While she was home, we learned she had a very rare genetic condition called Kabuki Syndrome, which can cause things including left-sided heart defects, cleft palate, low muscle tone, and sleep apnea. Iris had a cardiac catheterization followed by open heart surgery. She was known in the CICU for her fighting spirit and for making it clear when she did not like what was going on. She did well recovering from her surgery and went home about 3 weeks later.

However, 2 days after that, she suddenly went into respiratory distress at home and had to return to the hospital by ambulance. Many tests were run, and while no cause was found for the event, it was discovered that Iris had intestinal malrotation and so she had abdominal surgery to fix it. While recovering from the surgery, she had a cardiac arrest episode and had to have CPR performed and was put on life support.

Afterward, an echocardiogram revealed that some extra tissue in Iris’s heart had nearly blocked her VSD (hole between the chambers of her heart), causing too much pressure on the good side of her heart and making the muscle become thickened and stiff. We were given the option for her to have open heart surgery to attempt to give her more time, but we were told that she would almost certainly never leave the hospital even with the surgery, and would most likely remain on life support for the rest of her life if she survived surgery.

Family besides my husband and I had not been able to visit her in the hospital (where she had spent all but 2 days of the previous 2 months) because of Covid restrictions, and we did not want her to spend the rest of her life in the ICU connected to machines without family being able to see her. We made the decision to begin hospice care instead, which would mean that her brother, grandparents and aunts and uncles could come see her. Family visited and then a couple days later, I held her and sang to her as we took her off the cardiac medications that we thought were keeping her alive. Miraculously, her blood pressure dropped a bit but she remained stable. We removed her from the ventilator the next morning and were given the option to bring her home under hospice care for her remaining days.

Iris spent 11 final days at home, spending much of it outside under the blue summer sky with family. We completed a bucket list of items such as seeing fireflies, visiting one of her grandfathers in the next state over, and going on a boat ride. Iris died in our arms under an old oak tree in her grandparents’ back yard, looking up at the trees and sky instead of hospital lights.

We did not have a funeral due to the pandemic. A few weeks later, we drove cross country back to our home with our son. I found out I was pregnant again a couple months later. Our second son, Robin, was born in 2021 and is heart healthy. Robin has always been an exceptionally happy and smiley baby and while he could never replace his sister, he has brought his own much-needed joy to our family.

Although our two sons are actually our rainbow babies, we associate rainbows more with Iris because of her name. I share about Iris’s story and my grief on Instagram at @irisesandrainbows. The online grief community has been a major source of support for me, both after my pregnancy losses and especially after Iris’s death, and I hope that by sharing our story, I might not only help continue Iris’s legacy but also help other bereaved parents to not feel so alone.

Read more about Kabuki Syndrome here.

Photos taken by B3 Photography.

Find out more about Project Finding Your Rainbow.

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