Parents: Corinne and Michael
Diagnosed after birth, lived 1 day
Rowan Johanna’s Story
The whole family was waiting to celebrate: a year ago Corinne lost her mother to cancer; she and Mike were now expecting their first child. Her pregnancy had gone well; they were so eager to become parents. The only sign that anything might be wrong was when they saw a choroid plexus cyst during their 20 week ultrasound. They followed up with a level II ultrasound that didn’t show any other markers. They didn’t do any other testing; figuring that they were not considered high-risk and that whatever happened they wanted to carry their baby.
During her 38-week checkup, they did an ultrasound because the doctor was unable to tell which way the baby was facing and wanted to confirm breech. They discovered severe polyhydramnios, and a very tiny baby. Moderately alarmed, they decided to come back in 2 days to see if the hydramnios would improve at all. It did not, so they induced.
Corinne recalls, “While I was being prepped for induction the doctor came in and said that he and the perinatologist had met and discussed the presence of the cyst and now the small baby and the fluid problem, and told me that it could be one of several things, including T-18. But we just could not be sure. We decided to continue as though our baby was fine, just not thriving in the womb.”
As the induction progressed, the baby’s little heart was not tolerating labor well, so an emergency c-section was ordered and suddenly things got rather serious. “I began to cry. I remember the nurse standing over me and looking into my eyes and telling me that I had to calm down so I didn’t hyperventilate. ‘This is not the way it was supposed to be’ I told her. ‘I know, sweetie, I know.’ as she rubbed the hair back off my face. Then my husband appeared at my side and they began the surgery. When the baby arrived I remember the doctor saying ‘It’s a girl’ and I stopped my sobbing and my husband and I just looked at each other and said ‘A girl??!!’ We chuckled because we battled for a boys name thinking we were having a son for the entire pregnancy, and had the girl’s name chosen from day one. I told them her name was Rowan Johanna. The entire O.R. grew silent as the doctors analyzed the baby. There were two teams of people waiting for the baby not knowing what to expect, the room was crowded. Rowan never made a sound. She was 3 lbs 8oz, and something was very wrong.”
She was rushed to the NICU and Corinne was sent to recovery. Michael went with Rowan. They put her on a respirator while they tried to diagnose her. She looked perfect, aside from her size, and while they were fairly certain it was T-18, they needed to be sure. Mike came in to the recovery room where Corinne was sitting alone with her nurse, wondering what was happening with Rowan. “He sat and took my hand and told me it was T-18, and she has a few problems,” Corinne remembers. “I was in shock, we both were. We just sat there holding hands.
”I didn’t sleep that night. I longed to hold my daughter. I was in agony from the surgery, and the crying only made it hurt more. It wasn’t until the following morning that I had the strength to get out of my bed and go see her. It was a short visit, she was hooked up to a lot of machines and it was difficult for me to stand up to see her.” When Rowan arrived, it was clear that she was not going to live long at all. She had a lot of the internal defects typical of T-18, and she was not doing well. The biggest decision they had to make was whether or not to call and have family and some close friends come to meet her. Although they were in a state of shock initially, they had exceptional NICU nurses who did their best to make many choices for them yet still inform them beforehand. This helped them make good decisions about what to do with Rowan and made sure they got a lot of time with her. They had her baptized, and asked the nurses to hold onto all of her items for them, and invited all of their close friends and family to come hold her and be with them while they got to see her. They had a large gathering in their room and brought Rowan in without any machines. Everyone got time with her and she was given back to Corinne. She died in her mommy’s arms surrounded by people who loved her. It was December 18, 1999.
“I am fortunate to have so many memories of my daughter’s 22 hour long life. I remember that she smelled very sweet, almost like she was coated in sugar. I remember looking at her perfect little face and thinking that she looked like me. We have tons of pictures from that day. The most solemn moments were when she actually died in my arms. I remember that she felt lighter somehow. And that she finally looked relaxed. I think those are the things that are most vivid today for me.
“We had a really wonderful memorial service. When Rowan arrived, the hospital chaplain came to us and was a true source of comfort to Michael and me. Since we do not have a priest, we asked her to hold a memorial at my father’s house. It was Christmastime and we all sat in the living room around the gigantic tree and the chaplain lit a pretty pink candle. She instructed everyone to pass the candle, and while they held it, to say something, anything that came to mind. We heard wishes for us, prayers for Rowan, and some truly heartfelt words from my sisters, brother in law, and some close family friends. When the candle was handed back to me I recall that I was overcome. I read a poem entitled When Hello Means Goodbye and talked a little about my fear that people would forget that Rowan lived. I didn’t want her to become a sad incident in my past; I wanted to honor her by making sure everyone knew about her. I was surprised at my words, because I never thought about that particular thing until I held that candle. It was a very moving and meaningful service.”
Corinne is very grateful for many things about the experience. “When Rowan died, we were consumed by a community of grief professionals that we never even knew existed before. So many people reached out to us, in part because we were so open about what happened. There was a rather large gap in how our families responded, most of them became rather absent in our time of need and actually still are unwilling to really talk about it. So, I am most grateful for all of the selfless and compassionate people in our Denver community who were there for us and guided us through so we could live our lives. Also for our friends who did not shy away. But mostly, I am thankful for my husband, Michael. He stood by and although I know it is equally hard for him, he has always been there for me. Our bond is stronger as a result of losing Rowan, and I think we are very lucky.”
There are also some things with which she has struggled as well. “My husband and I lead rather secular lives. We were raised Roman Catholic and both went to Catholic schools. We are spiritual people, but have strayed away from the R.C. church for various reasons. After Rowan’s brothers and sister arrived, I promised myself that I would bring them to church and raise them with religion, and let them decide when they are much older what role it will play in their lives. At the time of Rowan’s birth and death, I felt that whatever faith I had was gone. I felt abandoned and singled out somehow by God, and I have as yet been unable to come to terms with that. It has been a difficult thing for me.”
Eric Clapton’s song Tears in Heaven has really affected her in relation to Rowan’s death. “I have been left with this total emptiness in my heart where Rowan should be. And I am tortured by the thought that she died and is just gone. My mother died the year before Rowan, in December 1998 and I never felt her with me or dream about her… it is like she never was. Whenever I get down about Rowan, I find myself focusing on “Do you see me? Can you see the love we have for you?” I ache over this to this day. That song says “Would you know my name, if I saw you in heaven” and it just really hits the mark with me.
“Almost four years have passed, and we are still dealing with losing Rowan. I write a lot about it, and find so many things daily that are meaningful to me. We have since been blessed with two sons and a daughter. While our children are still too young to know about life, we show them Rowan’s photo and explain that she is their big sister in heaven. We strive to be good parents to our surviving children as a means to honor Rowan. Although the pain and the lack of her are still very present, I have learned that it does get easier in time. One of the things Mike and I both felt when Rowan died was that the level of happiness we were able to feel was somehow decreased afterward. Like we could be happy again, but never as potentially happy as we had been before… we were wrong about that. We are very happy today.
“I wish she was born healthy. But given the circumstances, I don’t think I would have changed a thing.”