The voice of parents

Kudos to Acta Paediatrica, for an article by a group of parents who were all faced with antenatal counseling in a situation of high risk for extremely preterm delivery. (Staub K, Baardsnes J, Hébert N, Hébert M, Newell S, Pearce R. Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth. Acta Paediatrica. 2014)

The families (who I believe were all treated in Canadian perinatal centers : UPDATE: one of the families was actually seen in an Australian center) recount their experiences, the first is very distressing, an infant about to be born at 23 weeks gestation, with an estimated weight which is in the expected range for 23 weeks, who was not even given an option of attempted stabilization. Rather than giving Marcus a 20% chance of survival (a chance which is even higher than that in some parts of the world with a more positive attitude), he was given a 100% chance of dying. I would say that if fully informed parents shared in a decision that this decision was consistent with their values, and that they wished for comfort care only at birth, then it should be considered reasonable to provide that approach, but the family writing in this article was not given that as an option, they were given a ‘fait accompli’ : they were just told : we don’t do that here.

One of the babies, Domenica, should be dead according to the CPS guidelines; she was born some days before she reached 23 weeks gestation, and, according to our Professional Society, stabilization should not be offered. As you will see from the article she is doing really well.

The list of recommendations from the parents at the end of the article should be required reading for neonatologists everywhere. They should not be hugely surprising to ‘us’. but unfortunately as some of these stories show, they will surprise some health care professionals. I will reproduce them below for those who do not have full text access to the article, but if you are a health care provider and have access, please read the vignettes and the discussion that go before.

Recommendations for healthcare providers

1. Tell women that there is nothing they could have done to prevent the premature birth from happening.
2. Our unborn children have a story and are part of our hopes and dreams. Do not use gestational age to categorise our child. Ask us if our unborn baby has a name.
3. Each baby is different. Have a personalised approach. You can tell us what generally happens to children about to be born at the same stage of gestation as our child, but please also describe to us the particularities of our child that will influence his or her outcome.
4. Each family is different. We disagree that every family needs to receive extensive information about everything negative that may happen. Some parents want statistics, others want the general picture. Some parents want to make important decisions on their own, while others want recommendations. Please listen to us individually.
5. We need to trust you. Do not tell us that babies at 22 or 23 weeks do not survive. Do not tell us that most preterm infants are disabled. We rely on you to know your data. Reflect on the difference between medical numbers and medical values. Do not tell parents that their child will have a negative impact on their family. You do not have data to support these claims. Many clinicians decide that giving babies a chance is not worth it for a 10%-20% survival rate. Our discussions should be about values and not so much about percentages.
6. Give us balanced information. Tell us about what our children may, or may not, be able to do. Also tell us about the quality of life of other preterm infants have when they get older
7. Words are important. Before our child’s birth, do not ask us if we want to do “everything” or “nothing”. Have you ever met parents who wanted “nothing” for their child? Do not use the word resuscitation, as premature infants are not usually defibrillated. That is what we think resuscitation means when you use that language. Use the word stabilisation instead.
8. Do not take away the hope we have. There is always hope that we will deliver tomorrow. There is hope that we will be able to spend some time with our child. There is hope that we can survive the death of our child with positive memories. Do not abandon us. Instead, tell us that you will be there whatever happens.
9. Empower parents. When other family members are present, emphasise that strong families are important.
10. Be proud of the work you do. It is so important to us. You make it possible for us to share precious time with our babies. You are the heroes for so many families. You help babies survive and we are thankful for that.

One thing I want to re-iterate is the need to give balanced information. Most position statements and decision aids for extreme preterm delivery are designed to ensure that families know all of the bad things that can happen to extremely preterm infants.

It is analogous to a decision aid for prostate cancer therapy only listing death, infection, incontinence and impotence as potential outcomes of a prostatectomy, without mentioning that it might also save your life! How could anyone make a balanced, informed, decision if they only hear of the downside?

Surely our pride in our work (and I am proud of what I do, thank you Mme Staub et al) should lead us to acknowledge that most extreme preterm survivors so well, that, among survivors, disabilities are variable and often quite manageable, and that quality of life is acceptable to excellent for the large majority of those who survive, both those with and those without disability.

About Keith Barrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research. Bookmark the permalink.

3 Responses to The voice of parents

  1. katharinastaub says:

    I just had to chuckle. As your article came in, I was just working on the last proof-reading of “Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth”! I am very happy that we are being given the opportunity to share our side of our experiences prior to the birth of our children.
    In reference to your last paragraph, I do think we need to have a bigger discussion about what it means to live with “disability” or a “difference”. The families I know are quite happy and adjusted. Not to say that raising children is easy..
    Thank you for sharing this with your audience Dr. Barrington.

  2. Marty says:

    Thank you for this posting Keith. Disseminating widest. Suggest these recommendations for neos counseling parents apply to all challenging medical cases we encounter, including those involving infants with trisomies and other chromosomal disorders.

  3. isabelsmum says:

    I found this post when exploring your website out of curiosity – sparked by the publication of my BMJ article last week about our experiences of doctors in treating our trisomy 18 daughter. I just want to say how much your post applies to situations like ours as well as those who are preterm, and IF ONLY these messages could be core ones for both neonatologists and paediatricians across the world. Thank you for spreading the word with such clarity. I agree also with the comment above about living with disability or difference; there is a presumption of an unbearable “burden” that simply isn’t the case for us and many other parents. Yes, there is readjustment to make, and a new world to get used to (especially the medical bits) – given as cold hard facts we might have said we could never cope with that, but given the reality of life with our daughter we don’t just cope, we have more joy, fun and love in our life than existed before she did 🙂

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