Regret

Out of all the things I regret about Luke’s loss, one that brings among the most pain is that we didn’t spend more time with him after he was born.

On the day he died, a friend who’d lost her newborn son alerted us to Now I Lay Me Down to Sleep, a photography service for parents experiencing perinatal loss. But then I ended up delivering him in the middle of the night, when the photographer wasn’t available. For some reason it didn’t occur to me to wait a few hours, when the photog would be on call again. As a result, the only photographic evidence we have of his existence are a few grainy shots taken by the nurses; the only way I have come to know the details of his face is by cropping in on a photo taken of the three of us from about 10 feet away.

We didn’t bathe him or dress him either. We simply held him and kissed him and cried. He seemed so fragile. And then after an hour or two, we gave him away forever.

Our hospital at the time didn’t have a Cuddle Cot, a cooling device meant to give grieving parents more time with their children. Thanks to a lobbying campaign by a few of us local loss moms, the hospital now has one. But that option wasn’t available to us, and we were robbed of the opportunity to spend hours or days with our son, the only time we would ever have with him.

I’ve met so many incredible loss moms, and I love them all. But it hurts to see how many of them have numerous beautiful, professionally staged photos of every part and parcel of their babies. At least they have that to hang onto. I don’t even have a lock of his precious hair. Only fleeting, drug-hazed midnight memories of the worst day of my life.

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Response from the hospital, part 2

I spoke to the perinatal loss coordinator at the hospital yesterday.

  1. I was never supposed to be moved to a different floor after the delivery. That only happens if the family requests it.
  2. We were supposed to receive a piece of paper with Luke’s name, weight, length, and handprints. They told us his length but I don’t remember what it was, and it’s not listed on the death certificate.
  3. Cuddle Cots are cooling units designed to fit inside Moses baskets so that grieving families can spend as much time with their babies as they want without having to worry about further decomposition of the body. If we’d had a Cuddle Cot with Luke, we could have spent a lot more time with him and gotten many more photos, in addition to being able to bathe and dress him. Many U.S. hospitals are installing Cuddle Cots, and I told the perinatal loss coordinator that I wanted to raise money to place one in my hospital. She said four or five other mothers have offered the same thing, and her supervisors have nixed the idea because of—get this—fears about infection. So it seems that we have a lot of education to do there.

So, those are the unfortunate facts.

Response from the hospital

Dear Angela,

I am one of the right people to get in contact with on your recent stay as I am the perinatal loss coordinator. First and foremost I am extremely sorry for the loss of your son on Aug 21. I also want to apologize that I was unable to meet you during your stay. When we have a loss on the unit I try and meet everyone; however, sometimes this does not always happen. I am glad that from a patient standpoint you felt you had great care with your nurses. I am saddened to hear about your other feedback. I could give you a thousand excuses or reasons as to why things were and were not done a certain way but that does not bring Luke back nor will it bring any peace to the loss your family is experiencing. If it is not too much trouble I would love to have phone contact with you to discuss your stay and experiences a little further. I am back to the hospital on Monday if you would like to give me a call. All of your feedback has been beyond helpful and we are always working on continuing to improve our program. Please don’t ever hesitate to email or call.  I look forward to hearing from you and will relay your feedback to our unit manager.

Letter to the hospital

Dear [],

I’m not sure if you’re the right person to direct this correspondence to, but I received your postcard in the mail and thought I’d give it a shot. I recently filled out the survey I received on my delivery experience at the hospital, but I also wanted to follow up with someone personally.

My son, Luke Wyatt, was delivered still at 2:07 a.m. Aug. 21. I have a healthy 2-year-old daughter and I had an otherwise normal pregnancy, so his death came as a complete shock (for which we still have no answers).

First of all, I want to say how wonderful the labor and delivery nurses were. I believe their names were [] (the charge nurse) and [] (came on after a shift change). They were so compassionate and attentive and made the process as smooth as they could given the circumstances.

I wanted to give some feedback regarding our experiences after the delivery. We knew that we wanted to hold him and photograph him. When we first arrived, the charge nurse had left a message for the Now I Lay Me Down to Sleep photographer, but since it was nighttime, they weren’t on call. So when we delivered in the middle of the night, we gave our camera to the nurses, and they took some pictures. They did their best but unfortunately, the pictures aren’t the greatest. There aren’t that many, and some are out of focus. We don’t have any photos of his hair because he had his cap on in all the pictures. There are no photos of his face from a direct angle except for a few from far away.

I now realize that we could have simply waited for the NILMDTS photographer to be on call again, and we would have the wonderful, beautiful photos of our child like I see in the support groups I belong to. But it was something that, in my shocked and hysterical state, did not even occur to me at that time, and I will regret that forever. I wish that the nurses had suggested this to us.

They did emphasize several times that we could hold him for as long as we wanted. In the stillbirth support groups that I belong to, some of the families stayed with their babies all day. They got numerous photos, bathed them, dressed them, and the like. I didn’t even realize this was a possibility. For some reason – again, in my shocked, hysterical state — I was thinking “as long as possible” meant a few hours.

It would be great if the nurses could make this more clear to families in this situation in the future. If this is the only chance you will ever have to be with your child, you don’t want to have regrets later about what you didn’t do.

We also don’t have a lock of his hair – again, something that didn’t even occur to me to ask for. And we do have footprints, but we have no handprints.

My other feedback pertains to what happened after I left the delivery room. Instead of being taken to the family center, I was taken to a whole different floor. Many of the people coming in to the room didn’t know what had just happened to us (when we were discharged, the orderly joked, “So, how long have you been in prison here?”). I was only checked for bleeding a few times, and I was helped to the bathroom once. I went from being surrounded by care and compassion and attentiveness in the delivery room to a completely different aftercare experience. Honestly, it felt like, “Well, she doesn’t have a baby, so let’s just get her out of the way and dump her over here.” When my first child was born (she’s healthy and now 2), there was a lot more monitoring and help in the family center and it just felt completely different.

I can understand that some families might not want to be in the family center after this experience, but I think people should be given the option.

I hope that this feedback is helpful and can be used to improve the hospital experience for families in this situation in the future. Thank you for your time.