It is becoming more common in our society for hospitals to offer some sort of organized support for women and families through the experience of Perinatal Death (pregnancy loss, stillbirth, neonatal death and SIDS). Less common are programs where a pre-existing system of support exists for those who receive the diagnosis of an unavoidably life limiting condition for their baby (and opt to maintain the pregnancy). In the literature, it is called \”Perinatal Hospice.\” When I started our program 6 years ago, it was one of only 40 in the world and now there are over 150 (go to PerinatalHospice.org for info). I work with moms/parents/families to help them navigate the tricky steps of the pregnancy, birth and resolution/healing time.
They have taught me so very much.
I have come to see that there is an almost predictable pattern in how they perceive their experience and I walk a tight-rope of respecting how they feel right at this minute with the sage wisdom that their perceptions of their whole experience will evolve greatly over time. It reinforces my own life experiences that we often change what and how we think of our trials as we continue living and growing.
Below is an essay written Julie who I came to know in the course of preparing for the birth of her child. Her story became a story that we shared and I think there is much to learn in it.
My husband and I were presented with the words: “If it were my wife, I would terminate. It’s going to be a long and complicated pregnancy with nothing fruitful in the end.” It was spoken by our perinatologist the day we received the fatal diagnosis for our daughter Robin Elizabeth. They have been forever etched in my mind.
Our sweet daughter, our third child, would not be capable of living outside of the womb. For the next four months, we would carry Robin fully understanding that she may only live for a few minutes after birth. Denial, heartache, anger, sadness, anxiety, and trepidation – just a few of the emotions that would consume us. Through all of this, my husband was a rock. I drew strength from him and the fact that he knew the trial we were experiencing was something we could weather. Together we were determined to honor our daughter. We took a trip to the ocean so she could hear the sound of waves, played music that would make her kick, tried our best to explain what was happening to our older children, all in the midst of deep grief.
Our Obstetrician was terrific about supporting us and respecting our wishes. He referred us to our local hospital that offered a system of support often called “Perinatal Hospice.” Nurse Tammy assisted us in walking the precarious steps over the months that followed. It was difficult to imagine that I could ever feel better about this experience, although I vividly remember Tammy helping me realize something to which I would cling. Our other children would know how much we loved them by bearing witness to the love we were showing this baby. They would forever know that had they been the child with a fatal diagnosis, we would have loved and respected their lives as well.
Robin was born. After so many months of waiting, Robin greeted us with incredibly red lips, bright blue eyes, and the sweetest cleft in her chin. In that moment, all of our sadness melted. We were parents holding their newborn daughter. I often like to say that Robin was loved, hugged, and cradled for the entire 41 minutes that she was alive. Not very many people can say that they were cherished and surrounded by love for their entire lives.
Tammy had coordinated specific aspects of our care to allow our time with Robin to be spent the way we desired. She spoke of “sacred parenting” to “describe the time a couple has with a dying newborn.” Tammy helped to provide a place where we could be parents to Robin in the precious time we had, including minimal interruptions from hospital staff.
Four years pass…
In time, we move through life; our intense grief, a lot of healing, the growth and strength of a marriage, the anxiety of a subsequent pregnancy, the healthy birth of our fourth child, and a lot of love and support. I began to mentor other mothers in these situations and consulted back to Tammy as a Parent Advocate. She became a dear friend.
Tammy had been networking and teaching about Perinatal Hospice and had come to know Akiko, a Nurse Researcher and Midwife who was working toward introducing the Perinatal Hospice care model to Japan. Akiko accepted the invitation to do a site visit at our local hospital and Tammy asked if I would be interested in joining them, sharing Robin’s story, and “tagging along for lunch.”
September 6, 2012
When I met with Akiko and her translator, I brought with me a beautiful scrapbook filled with pictures and stories of Robin’s birth. Both women were rapt with attention as they asked questions, took notes, and listened.
It turns out that Akiko’s visit was quite the big deal and “lunch” was a reception where administration from our hospital and all areas of the Women’s Services Teams were represented. I didn’t expect to say a word until attention was focused on me and I was asked about my experience where I was again able to share Robin’s beautiful story and explain to my hospital’s leadership how much the compassionate care we received helped in our family’s healing.
September 7, 2012
The following day I was forwarded an email that completely rocked me. Tammy received an email from Akiko thanking her for the time and effort it took to organize such a great meeting. The first line of this email sent me reeling: “Dear Tammy, Thank you very much for making my visit so fruitful.” I immediately had tears in my eyes. We had stepped out in faith that God had some purpose in our child’s life and our suffering. We had been told that our daughter’s life would never be “fruitful,” but here was someone from across the globe who was recognizing the value in her life. This was not at all what I had expected for God’s plan. I never imagined that Robin’s story would reach beyond our family and friends; but now it was reaching around the world.
September 8, 2012
The story is already so powerful yet God was not done. The very next day, I received a call from a mutual friend telling me that Tammy’s husband had died very suddenly in their home. I got food and went directly to her house where I was the first friend to arrive. The woman who was there for me when I needed her was now consumed by grief and sadness and in need herself. I tended to her as she had tended to my tears, confusion, and sadness. In Tammy’s words, “In God’s economy we often take turns in service and strength.”
Four and a half years have passed since Robin was born. I can’t imagine how many times I must have told the incredible story of our daughter’s life. Because of her, we witnessed the blessings of overwhelming love and support from dear family and friends. Because of her, I have helped to mentor other mothers who are carrying to term. Because of her, hospital staff in Japan will receive practical ideas that will help care for families wanting to honor their children and aid in their road to healing. Because of her, I befriended a remarkable woman named Tammy Ruiz, and in her time of need, I was able to try to return the compassionate care that had been bestowed upon my family and me.
The dictionary definition of “fruitful”: “Producing good or helpful results; productive.”
Our little 41-minute old has produced some pretty incredible results and helped an awful lot of people.
Sounds pretty fruitful to me.
© 2013. Tammy Ruiz. All Rights Reserved.
Photography: See our Photographers page.