Rosa's Story

Rachel Nankivell and Peter Zwart
Issue 6, April 2002

Our daughter, Rosa, was born on 19 September 2000. She was small but strong, with red hair and blue eyes. For twelve hours we cradled and rejoiced in our new, healthy, beautiful baby. But this was not to last. To our shock and initial grief, later that day Rosa was diagnosed with Down syndrome and our neatly imagined future disintegrated. We took Rosa home to the security of loving family.

Those early days were difficult, but we found strength and confidence in Rosa's calm and peaceful nature. We loved her and began to cherish the experience we were being led into. But this too, was a calm to be shattered. Nine days later, we took Rosa to the hospital for a routine echo-cardiogram only to learn that she had a serious heart condition. The doctors did not know whether Rosa would even survive the night. Our slim hopes lay with the video of her echo, couriered overnight to Green Lane Hospital, Auckland. To our relief, Green Lane believed it was worth a closer look and agreed to take Rosa for further observations, with no promise of treatment. We accepted this opportunity.

We flew to Auckland and were immediately seen by a cardiologist. It was decided that Rosa's condition was operable. We waited ten days amidst the warm, caring and professional environment of Green Lane. The night before her operation the surgeon and anaesthetist discussed the procedure with us. We signed the forms and, against all parental instinct, delivered our wee baby into the arms of others.

Against the odds, the operation was a success and Rosa came through and stabilised on life support. We permitted ourselves to dream of going home again, putting this all behind us. But time went on and attempts to remove Rosa from the machines which breathed for her were not successful. A further ultrasound showed that Rosa's mitral valve was simply too small to allow her heart to function normally. We sat with the medical team and discussed how we would release Rosa from the ventilator for the last time, knowing that this time she would die.

In a private room, surrounded by her family, the ventilator was removed, and for two days Rosa lived, cradled in our arms, our loving touch, song, tears and laughter. She filled herself with her family before returning to heaven.

Sitting in the room, holding her now still body, we were told that Rosa would probably be required to have an autopsy, at the request of the coroner. It was unbearable to think that her body, so small and broken, would again be opened. But we were told it was a legal requirement, not a choice and we consented. Trustingly we handed her over, not willingly.

Two days later we returned to Wellington and Rosa was brought home. We buried her beautifully with a Mass of the Angels. We journeyed on, blessed by her beautiful soul. A year later, holding Rosa's six-week-old sister, we unveiled her headstone, sang songs, shared prayers, and lifted the tapu on a year's grieving. It seemed right and complete. Rosa's life and her death were resolved. We moved forward.

But one last and unexpected time our vulnerable peace was to be turned on its head. Just 16 months after Rosa's death, we overheard a news item that Green Lane Hospital had a heart library in which were kept babies' hearts obtained without consent. It could not affect us we thought. But within days we learned that Rosa's heart was indeed in the library. Later still it was revealed that her heart was there due to a decision made by a locum pathologist who, feeling out of his depth in investigating Rosa's heart condition, chose to remove it from her body without consent, so that someone more qualified might be able to perform the autopsy on it at a later date. When we asked for a copy of the coroner's report, what we received we now realise was not the completed report. It is clear that the knowledge that her heart had been removed was actively kept from us.

We were plunged back into the grief of one year before. This time it was not softened by the trust in the wonderful care we had known at Green Lane. Instead, we felt betrayed by those we had known and who had shared the intimacy of our journey. And we ourselves had failed to protect our baby from this final careless and callous action. We were at once grateful for all the care and aroha shown by the staff at Green Lane and deeply hurt that this could have been done to our daughter, behind our back.

Throughout Rosa's short life we were given full information and advice. With this information we made the best choices we could make for Rosa as we faced these hard decisions. But this role for parents does not end with death. Amidst the pain of loss, one finds the beginning of healing in upholding the dignity of her life, the meaning of her death, in preparing a beautiful liturgy, and in making the best decisions we can. This role must not be denied to parents through paternalism. We have a right to be asked and to make decisions for our daughter in life and in death.

How do we resolve this, make it blessed and whole? We don't know yet. We are compelled to investigate why it happened, to ask hard questions, emotional questions. We know that many people are questioning systems as a result. If there is meaning to be found, it is that the lessons learned from the theft of Rosa's heart will prevent the same mistake happening to others, that dignity and humanity will come first in such decisions in future, and that it is harmful to parents to be denied the information and choices that are available.

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Rachel Nankivell & Peter Zwart, Rosa 's parents, live in Petone and have two other children, Henry and Maria.