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Hope for Trisomy 13 & 18
P.O. Box 921
Springtown, TX 76082

Phone: (866)977-6637 

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Rowan Johanna's Legacy PDF Print E-mail

The Legacy of Rowan Johanna O'Flynn
December 17 - 18, 1999

It was the week before Christmas of 1999 when during a routine visit to my OB for a weekly checkup we discovered something was wrong.  I was in the final month of my pregnancy with our first child.  I was twenty-eight years old, my husband and I were newly married, and we were looking toward our future as though we were living a charmed life.

As my doctor was feeling my belly, he was unable to ascertain the position of the baby.  He had his nurse roll in one of the smaller ultrasound machines they used so he could perform the ultrasound on me himself.  He placed the wand on the top of my belly and when the image appeared on the screen we both let out a "whoa".

I will never forget the image of our little baby; this tiny form floating like a bean in a gigantic black volume of fluid.  He measured the fluid and said it was nearly double what is normally present, which explained why I was so enormous and felt like I was carrying lead weights.  We decided that I should return in a couple of days to look again, and if the fluid was increasing that we would induce labor.  I returned that Friday to learn that the fluid had increased and I was told to head across the parking lot to Littleton Hospital.

The induction progressed poorly.  My uterus was unable to produce contractions consistently, and after my water was broken our baby went into distress.  An emergency c-section was performed and our daughter, Rowan Johanna O'Flynn, was born at 7:41 P.M. She weighed three pounds, eight and a half ounces, and she was 16 inches long.

She didn't make a sound.  They wrapped her up and brought her near my face to see her.  I remember saying there was something wrong with her eyes.  It wasn't until later that night that the geneticist from Children's Hospital would arrive and confirm her suspected diagnosis of Trisomy 18.  They put Rowan on a ventilator in the NICU shortly after she was born.  Over the course of that evening we learned the severity of her condition and started to wonder if she would live or die.  This was such a far cry from how we envisioned the arrival of our baby.

We were in a state of shock.  Our fear was the only thing that outweighed the physical and emotional pain on that first night.  So many unknowns in our future, in Rowan's future.  We were encouraged by the staff to prepare for anything and so we baptized her there in the NICU.  We also had a gathering in our hospital room with all of our family and friends so they could meet and hold Rowan.  The nurses brought her to me without any tubes or machines, wrapped up in a hospital blanket.  We passed her around to everyone who wanted to hold her.  Rowan never made a sound.  Her eyes were open and she was struggling to breathe.  She died in my arms about two hours later at 4:55 P.M.

Looking back upon this entire experience, I see now how my husband and I were blessed to be surrounded by all of these wonderful support professionals.  We didn't have to ask for support; it simply arrived.  We did not know to ask for guidance in our decision making; it was lovingly provided for us.  We had no idea about making memories and saving mementos; they were made and preserved for us.  So many things that could have been very different turned out to be so positive. 

A few weeks later, we started in the program at Assistance with Grief.  This was a closed-group, fixed session program that lasted for seven weeks.  It was such an amazing experience for my husband and for me.  We would never have entertained the idea of a support group, yet here we were as a result of a phone call from yet another amazing person who was watching after us.  Meeting other families, hearing the stories of their child's death, learning we were truly not alone was so powerful.

The impact that all of this support has had on me and my life after Rowan died has been profound.  I feel a sense of being saved.  Selfless individuals came to us, lifted us up, and held us close when we were so broken and felt so isolated.  They directed us, they comforted us, and they let us know that they cared.  We were not alone.

It is from this that Rowan's legacy was built.  In the spring of 2005, the Rowan Tree Foundation was born.  Inspired by our daughter, the foundation's mission is to provide ongoing support and resources for families who are coping with the devastating loss of a much loved child. We have a website and a peer support discussion forum, and in time plan to develop future programs and services.

Rowan Tree Foundation is a gift from our daughter.  It would never have come to be without having and losing her.  The work has allowed me to find meaning and a renewed sense of purpose.  More importantly, it is making a difference in the lives of other bereaved parents who are experiencing the comfort in learning that they are not alone.

Currently, we are working to build a child loss memorial in the town of Parker.  This project will become the legacy of so many other children who have died.  It will be a place to mourn and heal, a place to remember.  It is a project through which connections are being made and parents are reaching out to others in their own child's name.

The idea of legacy is talked about so often in the world of bereavement.  Legacy can take on so many forms.  For us, helping others after their child has died was the form of Rowan's legacy.  She will always live on in us.

(c) 2007 Corinne O'Flynn.  Rowan Tree Foundation provides support after the death of a child, regardless of the circumstances.  For more information about Rowan Tree Foundation, the Memorial Project, and other events that are happening, please visit


©2006 2017 Hope For Trisomy 13 and 18, Inc