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What Is It Like To Lose A Child?
Somebody once told me that losing a child is wholly contrary to nature, since it is supposed to be the parents that go first.
When I was a lot younger, our 6-week-old baby daughter had an ear infection. After consulting with our friend who is a pediatrician, we together decided not to do anything about it — especially since in a very recent paper it was shown that with or without antibiotics the otitis (ear infection) would heal in about the same time. No need to prescribe antibiotics for that. Pus was coming out of her ear, so we though the drainage was okay.
Two days later, I came home from the hospital (where I among other things was supervising the adult intensive care unit) and I noticed her to be quite ill, lying in classical opisthotonus with her back arched back, so the diagnosis of a meningitis was made. Our friend saw her in our hospital where I took her, a lumbar puncture confirmed the diagnosis. The next day she was transferred to an academic children’s intensive care unit, where she went into full blown septic shock, needing fluids, pressor amines and ventilation.
The staff and child intensivist were great, giving us all the information and leeway we needed. Unfortunately I had to keep on working, since my partner was on vacation. So in the morning I worked, and in the afternoon went to the academic center to see my daughter. After about 10 days nothing good happened, I asked her intensivist how to proceed, so he stopped the sedatives (at that time we still believed in keeping the critically ill in a coma to spare the brain). After a day he made an EEG, and another one the next day, both of them were flat. It was clear she was brain dead. I already knew beforehand that we were most likely going to lose her.
In the midst of all the emotions I felt we shouldn’t prolong everyone’s agony, so instead of accepting her intensivist’s offer to wait another night, we decided to stop the treatment the moment we knew she was beyond hope. I disconnected the breathing tube myself, took her on my lap, and waited many, many hours until everything stopped. It was terrible, after that we all were in a daze. During her illness, her 2-year-old brother was present most of the time, since I sincerely believe that he as a part of our family had the right to be present too. He still remembers some fragments from that time.
Afterwards we asked for a postmortem, which showed nothing new. Her intensivist told us he couldn’t bring himself to ask us for permission to do a postmortem, and was rather surprised by my request. I wanted to know everything we could learn about her illness, in the spirit of my normal line of work, so of course I would like to know so wanted to have it done. Like anybody else, I was looking if we had done something wrong.
After that I took a day off to arrange for her cremation and such practical matters, but started working 2 days after her death. I think that kept me sane, and the flow of work going, since my partner hadn’t returned from her vacation.
We kept it very much to ourselves, but when the day of her cremation came (that was the second day I was absent from work), a lot of colleagues and co-workers were there for us, which moved us very deeply. After some weeks we had to do something with all her things, which we did while in tears most of the time, but it gave us some closure. During her illness and afterwards, I often took a step back from myself and looked at which stage of grief I was in, very weird.
Like anybody else, I was looking if we had done something wrong.
We don’t forget her, but time makes it possible to live with the loss, speak about it without choking up or getting tears in our eyes. We have a photograph of her in our living room. Each year on her birthday, and the day she died, my wife goes to a small chapel at a place of pilgrimage to pray. I come with her, although I’m not a believer.
After that, if possible, I avoid treating (very sick) children, especially since our intensive care unit is not for children. I do what is needed, when somebody comes to take over I withdraw and feel unwell for some time. After all, we docs are human too.
On the other hand, one must remain practical, so I kept treating our very asthmatic son myself since both the pediatricians and family doctor were not comfortable with treating the asthma according to the latest insights. I was comfortable with treatment since I treated a lot of grown ups with asthma. I learned to stop doubting myself if I would make a mistake and cause big harm to our children. They are both quite well now, although I did initially miss a broken (but not dislocated wrist) after a fall when they were still young.
In the aftermath, I felt I needed some practical advice, so I talked a lot with a colleague who’s 7-year-old son was killed in a car accident right in front of his eyes some years before. I noticed he too worked very hard, maybe also as a way to cope with his loss. I also talked with a good friend who was a respected family doctor of my age. He told me if we wanted a family with 2 children, not to wait too long, since it’s good for them to not be so far apart in years or else might struggle to connect. So, contrary to our first thoughts, after less than a year our second daughter was born.
We took great care not to let her become the surrogate for our first daughter. Our son promised himself and us that he would raise his new little sister and teach her all he knew, which he indeed did. They have a very special relationship. I think this experience has made me a better doctor, at least that is what I hope. I believe I empathize better with my patients and their family, while still retaining my very practical and business-like way of doing things.
Did the fact that I as a physician who was doing intensive care at that moment help? I think it did, since I better understood what the situation was and what we could or could not achieve, so could make sound decisions uncluttered by emotions which at times can make it worse.
Liang-Hai Sie is a retired general internist and former intensive care physician. Read more from Quora below: