A recent New York Times Op-Ed Piece called “End of Life, at Birth” has cause me to go back and relive those days almost three years ago when my husband and I were confronted with the terrible choice of trying to continue my pregnancy or to let our baby go.
For those of you that haven’t been with me from the beginning, my story is one of infertility, intervention, and miscarriages… until the day I found myself pregnant.
This pregnancy was a totally normal and uneventful pregnancy until it wasn’t. There was no warning, there was no preparation, there was just bleeding. I was only 23 weeks and 2 days into my pregnancy. My first full day in the hospital, we were visited by the perinatologist on duty, whom I now lovingly refer to as Dr. Doom. His job was to counsel us on our situation and to help us make decisions about what we wanted to do. Joining Dr. Doom on this visit was a neonatologist from the NICU. I do not remember a lot of this conversation as I was laying with my head 30 degress lower than my feet, contracting up a storm and being pumped full of magnesium sulfate and god knows what else.
The things I do remember were this:
- Dr. Doom told us that we were in a dire situation
- Dr. Doom told us the survival chances of our baby were very low
- Dr. Doom made it clear that the survival chances for our baby were worse if he was a boy (we didn’t know the gender of the baby – and didn’t want to know)
- Dr. Doom told my husband that we should “let the baby go”
I think you can see why we call him Dr. Doom.
Before I get into what I think should have happened, there is another part to this consultation – the neonatologist.
My husband is a scenarios kind of guy. He understood that the survival chances were low, but what he wanted to understand were the chances of a normal life. If we went ahead with the pregnancy, what kind of a life could our child be looking at? Would the baby be so disabled, s/he would never leave a hospital? Would s/he never be able to interact with us?
He just wanted to understand what the range of disabled meant – because it is a BIG range. The neonatologist was totally unprepared, and did nothing to answer my husbands questions or help direct my husband to where he could look for some answers.
I know… every child is different and there are no guarantees… but there are statistics and trends. My husband just wanted to know the odds.
In the end, we made the decision to press on with the pregnancy after we talked with our OB. Our decision was not based on statscis or survials chances, but was based 100% on emotion. Once my doctor made it clear that no matter what decision we made, I was going to have to deliver a baby and, if we were going to “let the baby go” after the delivery, we might have to watch our baby die.
That was something I could not do. I had been through hell to get pregnant and I just could not watch my child die without doing everything I could to save him or her.
So… what could Dr. Doom and the neonatologist done differently?
To me, that really is the crux of things. How can medical professionals talk to parents in the most intense crisis time of their lives about gut wrenching choices and decisions in a way that the parents will hear them. Of course, this is assuming they even have a chance to make a decision. Many times, the situation is so critical parents do not even get a chance to make a choice.
The absolute most important thing I took from our consultation was the need for doctors to read the room. What do I mean by this? It is quite simple. The message the doctor is trying to pass on to the parents is a very important one. How they deliver that message is key. If their approach is off or they are agitating the parents, then their message will not get through.
Read the room.
You must be able to adjust your approach to each situation. If telling a parent to “let the baby go” shuts them down to you, you may never get the chance to explain why you feel that, and what the alternatives are. I do not believe Dr. Doom was malicious in his dealings with us – I just believe he was unable to read the room and adjust his message and tone in a way that would of allowed us to hear him.
So – back to the article.
There are no guarantees. Nobody knows that the true outcomes will be. My son was born at 24 weeks. His NICU stay was 95 days. He had a PDA ligation and ROP surgery. For a 24 weeker, I call that as an easy NICU ride. His first year at home was totally uneventful. We didn’t have hundred’s of appointments and a cadre of specialist to see. By the time he turned two, however, that had changed. We are now dealing with Autism Spectrum Disorder and twenty hours of therapy a week. Do I really think someone could have predicted this back when I was in trendelenberg trying to hold the baby in or during his 95 days in the NICU. NO. How could they?
Yes, the discussion about the what ifs is vital. That discussion needs to happen early and continue with all the medical professionals in your life. Were I not having these discussions, I would not have noticed problems developing in my son and gotten him the early intervention I got him. The most important thing, however, is how you have these discussions.
Medical Professionals… please read the room to make sure your message is getting through.
Parents, if you don’t like the way someone is talking to you, ask for someone else or tell the doctor to change their tone. Offending the doctor is not an issue – hearing what they are saying and asking questions is.
OK- stepping off of my soap box.
I’ve been following the story of your family for a little while and I just want to thank you for sharing such an inspirational personal journey.
This post in particular is very personal to me as 8 weeks ago I had to make the heart breaking decision to “let the baby go”; although in my case there wasn’t really any other decision available.
At my 20 week scan the doctors discovered that my baby was very small and the placenta was barely working. Within a matter of minutes I’d gone from the joy of seeing my baby on the screen to utter despair after being told that I would have deliver in just four weeks to give my baby girl any chance of survival. The perinatologist was pretty matter of fact in his demeanour but quite caring at the same time. He asked me to come back for a follow up scan at 23 weeks to check on her growth.
After a harrowing 3 week wait I went back for the next scan, hopeful that my little baby had grown enough. Unfortunately the flow from the placenta had slowed further and while my baby had grown a little it just wasn’t enough. It was only a matter of time before the placenta stopped and my baby was too small to deliver. As if this wasn’t bad enough, this time round I was seen by a perinatologist who was very short with me, left me with hardly any information (other than “your baby is going to die”) and expected me to make the most important decision I’ve ever had to make right there on the spot. I honestly believe that this was your “Dr Doom” (we went to the same hospital). He definitely did not know how to read the room. Nothing could change the facts that I was going to lose my baby, but showing a little compassion wouldn’t go astray.
I left the hospital an emotional wreck but held out hope that somehow my baby would start to grow, and grow and grow.
A few days later I was back in the hospital ready to have steroid shots to prepare my little baby’s lungs in the off chance that she held on a few more days to reach 24 weeks. “Dr Doom” came in to see me again, argued with my obstetrician (in front of me) that the steroids and testing they were about to carry out were pointless as my baby was going to die, told me my only choice was to end the pregnancy then left. Ok, it may not have all been quite as abrupt as that but that’s how my husband and I saw it. Once again, no reading the room.
The neonatologist on the other hand was incredibly kind, even though her news was bad, and this really made a difference to how I was coping. She gave me the facts straight but she was very compassionate (she actually left the room in tears). They’d made a mistake with the dates and I was really 23 weeks and 6 days. At this point my baby only weighed 11ounces. She should’ve weighed 1.5pounds. If I was to go ahead with delivering her at 24 weeks she would most likely be still born. In the very slight chance that she survived the delivery there would be nothing that the doctors could do to help her. She was too small for feeding tubes. She was too small for breathing tubes. She was so small that there are no survival stats available for a baby of her size. All the doctors could do was pump her full of painkillers while we waited for her to die. I couldn’t do that to my baby so I had to make the only the decision there was and let her go. The neonatologist, my obstetrician and the nurses who had been caring for me were all wonderful. They all reassured me that I’d made the right decision given the circumstances and when they told me how sorry they were for our family, I truly believed them.
“Dr Doom” did none of this. In fact, I never saw him again. And I’m glad of that.
Sally:
I am sorry it too so long for me to respond you. I have read and reread what you wrote a number of times now. Thank you so much for sharing your very personal experience. It saddens me that in such a difficult time you were faced with the same Dr. Doom I was faced with. He may be an amazing doctor, but I have heard nothing but negative feedback on his bedside manner and delivery. I have been lucky to be invited by the hospital to talk to the neonatology and perinatology practices. I held nothing back. I made sure everyone in the room (including Dr. Doom) knew how bad my experience was those first few days and how Dr. Doom’s delivery made things worse. Having the opportunity to tell him how hard he made things was really wonderful. It is a shame that it didn’t get through to him.
Making the decision you made sounds like the only thing you could have done – but that doesn’t make it any less gut wrenching. I am so very sorry for your loss. It does not surprise me at all that the wonderful Labor and Delivery nurses and neonatologists were kind and comforting. That hospital has an amazing collection of compassionate people on staff (minus a few jerks).
I look forward to following your blog and maybe running into you one day.
Melissa