My daughter is dying
Tat-Ying Wong, MD
CMAJ 1997;157:172-4
Tat-Ying Wong is a family physician practising in North York, Ont.
© 1997 Canadian Medical Association
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Medicine has to go beyond technology if it is to touch the soul. Meaningful and precious healing gifts cost little yet are so hard to give. Let me share a painful reminder of this.
Janice was our third child, and it was a complicated pregnancy. I was tired from balancing work with looking after my bedridden pregnant wife and two preschool children. The labour and delivery were uneventful, and Bonnie and I thought that our world was almost perfect. We had a good marriage and enjoyed our children, and I was happy with my work in family medicine.
At 1 month, Janice refused to feed and became lethargic, and then slipped into shock. I could hear her grunting as we sped downtown to the children's hospital. The triage nurse took one look and called the emergency team to resuscitate her.
When I came in minutes later after parking the car, the room was packed with doctors and nurses. It was a nightmare. Janice was fighting for her life as Bonnie stood crying in the corner.
I was impressed by how swiftly the team assessed Janice, got intravenous access
and did the blood work. I recalled my shifts as an emergency physician in a community hospital, but this time I wasn't running the resuscitation and intubating the patient. I was the helpless bystander. It seemed like hours before Janice's blood pressure and urine output were measurable. Would my daughter die?
After a cardiology consult, Janice was transferred to the ICU. As physicians we frequently forget the simple things that mean so much, so I appreciated how the ICU fellow dealt with us.
He put us in the quiet room, well stocked with Kleenex, and didn't talk until we sat down. He told us that Janice might die that day. The echo showed an ejection fraction below 5%. Bonnie and I cried in each other's arms.
I went home to look after the older children. Ruth, 3, cried as we prayed together. Matthew, only 1 then, couldn't understand what was going on. The next morning I took the kids to the park, where Ruth looked up at the sky and asked what heaven was like. Then she asked whether Janice was there yet. I cried. It is amazing how children can bring us out of our denial.
With our extended family's help, Bonnie was able to be at the hospital every day. I resumed work with reduced hours and visited Janice each evening, holding and stroking her, talking to her, singing and praying with her. The doctors were supporting her body while we supported her soul. A heart biopsy showed cardiomyopathy, and unless she improved the only definitive treatment was a heart transplant. We pressed the doctors for a prognosis, but they were reserved. I wanted to tell them: give it to me, I can take it. I too am a physician!
In the meantime, my brother asked our hospital librarian to do a MEDLINE search on cardiomyopathy in children. The search yielded 2 studies, and the statistics were indeed bleak. One-third of the children died within 2 months.
In sharing our experiences, I am repeatedly amazed at how Bonnie and I attributed drastically different meanings to what we were told. When we discussed possible palliative care, Bonnie was very upset because she perceived it as prolonging Janice's suffering. As physicians, we need to ensure that patients understand what we are telling them.
We kept in touch with friends and relatives, but in private we wrestled with our pain, hurt, uncertainty, shattered dreams and broken hearts. We needed people who could empathize with us and offer practical help such as taking Ruth and Matthew out for a day, or looking after chores to give us a break.
We also prayed. God's presence was very real, and I was surprised by the inner calm amidst the raging storm. After the first week, Janice had stabilized and was weaned off the respirator and intravenous inotropes.
After 2 weeks, she came home. I encouraged Bonnie to take CPR training and we learned to give Janice 5 different medications. Compliance was a struggle because she often vomited. I quickly learned how easy it is to write a prescription without understanding patient barriers to compliance. We felt exhausted and overwhelmed, and I was a doctor! What must other parents feel like?
Over the next 3 months Janice was in and out of the hospital with heart failure, feeding problems, failure to thrive and viral infections. Each time her frail body became a pin cushion during endless tests and attempts to insert IVs. Her pain became our pain. When at home she required 24-hour care and had to be fed small amounts hourly. She vomited whenever she coughed, and this meant cleaning up and starting over.
Friends and relatives did not know how to respond to our pain. Many remained silent, while others made hurtful remarks without intending to. The remarks indicated that they did not understand our suffering. The uncertainty was the hardest thing to deal with because we had to prepare for both life and death. As physicians, we sometimes forget that behind an illness there is a family in pain. Physicians who acknowledge and validate family suffering provide both strength and courage.
Janice's last admission came 4 months after the initial diagnosis. She deteriorated and I paged her cardiologist, who agreed to admit her directly to spare a long wait in emergency. Janice needed a new heart, and the transplant team ushered us into the cardiologist's office to discuss the options. They were surprised that we were so relieved, but at least there was hope. A heart transplant may introduce new problems, but at least they would be more manageable.
Janice was kept alive through total parenteral nutrition and 10 to 14
medications. Our daughter was skin and bones, close to her birth weight at 6 months of age.
I asked the hospital librarian to do another MEDLINE search on cardiac transplantation in children. I learned that even though this was a successful and accepted treatment, one-third of the younger children died while waiting for a donor heart. We jumped to answer each phone call, and our pager became the beeper of hope. We also realized that for Janice to live, another child had to die.
We discussed using an unmatched heart and the possibility of palliative care if she became too ill for a transplant. This was hard on Bonnie and I tried to convince her to see the psychiatrist who supports cardiac families. She reluctantly agreed and we went together. I was relieved. Despite my training in family therapy, I could not help her nor could she accept my help.
Janice had many close calls. She survived 4 operations to insert and reinsert her peripherally inserted central catheter, 3 major infections, kidney failure, pulmonary hypertension, several transfusions, a catabolic state and hypotension. With each crisis we prayed and asked friends to pray, and this seemed to sustain Janice. I wish doctors would prescribe this more often.
We continued to ride our emotional roller coaster, and at one point were considering experimental ventricular resection to buy time. The medical team shared our desperation and helplessness.
As Janice became the hospital's record holder for waiting the longest for a new heart, we began wondering why there was such a severe shortage of organs. We met with staff at the provincial organ retrieval program and decided to do something about the shortage. I would work with doctors and hospitals, while Bonnie would lobby the public. Friends helped arrange interviews on television and radio and in newspapers. We wrote letters to newspapers, journals, hospitals and doctors. We encouraged friends and relatives to sign their donor-consent cards. At least we knew that we were doing all we could for Janice.
I wish all physicians and their family members would sign organ-donor cards. Our greatest gift of healing is given when we promise hope to people who are suffering and dying. I hope that as physicians you too will encourage patients and their families to consider organ donation. We can increase the awareness of this need through waiting-room posters, brochures and donor cards that are available from the regional organ retrieval centres listed with this article.
The past year has been painful and unforgettable. Our faith in God has been our greatest resource: we discovered strength in weakness, hope in despair, wholeness in brokenness and life in potential death. With my professional competency rendered impotent and spousal support torn away by depression, I experienced a deeper spirituality and communion with God. I learned that medicine and spirituality are intimately connected, and the common threads are life and living, dying and death. Recognizing our own spiritual nature and that of patients will make us all better healers.
The sustaining power of love and prayer was very real. Janice faced death many times in her first year, but she didn't give up because she knew how much we loved her. Friends from around the world prayed for her regularly and our comforting touch and loving words infused her with a courage to live that no intravenous cocktail of inotropes could provide.
I have learned that my best friends are invaluable in providing a shoulder to
lean on, and that men need to learn to cry. Busy physicians often sacrifice relationships, and we discover the cost when crisis hits and there is no one to turn to.
I have travelled further in my journey as a wounded healer. Forced to confront my deepest fears, I now understand the inner fears of patients. Pain and suffering are no longer aliens to be feared and exorcised, but part of being human. When physicians are intimately connected with their own humanity, true healing can be offered to others.
Postscript: On May 24, 1997, Janice Wong underwent a heart transplant when an unmatched heart was found in the US. After recovering well initially, Janice died June 17 in Toronto's Hospital for Sick Children after developing a respiratory infection. CMAJ offers condolences on behalf of Canada's physicians.
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