An infant lost, another saved

So many stories about transplants really tug at your heart, but ones that include children and babies can be incredibly poignant. When I put out an appeal to speak to people about organ transplants, I was contacted by Ed Weir. He told me his story of their 1-month-old daughter, Rachel. Rachel died of sudden infant death syndrome (SIDS) 22 years ago. Most often when a child dies of SIDS, the child is discovered too late for their organs to be used in transplantation. In this case, Rachel’s death was discovered immediately. And because of that, many other children were saved or their lives were improved by Rachel’s gift.

Here is Ed’s story, in his words:

My wife was at the veterinarian with our dog just before we were to kennel them and leave on a vacation.  She was in one of the examining rooms nursing our one month-old infant daughter Rachel, while the vet tended to the dog. She looked down to check on the baby and noticed blood on her breast – her instant thought was that she had been bitten – our then four year-old had been moved to a bottle when she bit.  The next thought was the realization that Rachel didn’t have teeth yet.  She pulled Rachel way from her for a better look, realize that she wasn’t breathing and screamed that Rachel wasn’t breathing.

The vet dumped the dog off the examination table, put Rachel on it and checked for a blocked airway. Meanwhile, an emergency room physician who’d been in the waiting room with his dog ran in and started infant CPR while the receptionist called the police who arrived with a squad car and ambulance within minutes.  In no time at all, Rachel and the doctor in the ambulance and my wife an the cop in the squad car were at he large local hospital.  The dogs had been put in the on-site kennel.

During the ambulance ride and the first few minutes of emergency room care, Rachel was partially revived -she resumed breathing but had been without oxygen too long and went into a coma.  She was transported to a children’s hospital (St Christopher’s) in nearby Philadelphia where she slowly slipped away from us over the next 12 days, never regaining consciousness.  One or both of us was with Rachel the entire time – sleeping on unused gurneys in the hallway the first night or two.  We talked to her and touched her as much as possible – you never know what gets through to a coma victim. Does an infant have a will to live ? Will a familiar voice provide that will ?  The straw that breaks the camel’s back – can I bat it away?

Very quickly we realized that Rachel was probably brain dead and was unstable enough that she might just die – brain dead or not.  I brought up the possibility of organ donation – being aware of her state, of the need, and not wanting to forfeit the chance because nobody discussed it until it was too late.  When it became apparent that there was some brain activity, the attending physician was appalled that he had discussed it.  I had to calm him down, reminding him that I had raised the issue.

Very quickly, brain activity died out and we moved towards donation.  Our position was that there was a limited amount of time that we were willing to keep her alive for donation and that preparations should move forward rapidly.  Fairly quickly, a recipient was found for Rachel’s liver.  She had had an infection and her heart was not suitable for donation. Corneas, heart valves, and other tissues were harvested – we placed no limitations on what was taken. Harvested – there’s an interesting word.  The surgical team arrived from Pittsburgh (where the recipient was being prepped) by helicopter with their little cooler. Your child is removed from you – you last see her going through the operating room doors, they remove her organs, let her have the relief of death, perform an autopsy, and you’re left very, very alone with a closed casket. One of the lights of your life is gone and the chaos of days comes to a dead end.

A lasting memory is of our nurses trying to put off the harvest team to give us a few more minutes with our child – but they’ve got to go – there’s a kid waiting.  I now have an inkling of what it must be like to wait on death-row for your own execution.  Our older daughter who we’d carefully prepped to be a big sister was devastated – who knew that we were doing too good a job ?  But the most important point was that even if the recipient died, some other parent, in a similar emotional place got to say, “I did everything that I could for my kid“.

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Images: MorgueFile.com