Premature babies born alive should be given full care if strong parental wish. Gestational age alone should not be used for End-of-life decision.

I want to bring to light a common, but not well-known, practice in many hospitals around the world. Hopefully this petition will help to, at the very least, start a conversation with our goal to give parents the legal right to be involved in making life-saving decisions about their children’s lives.

Before I detail the goals of this petition, I think it’s very important to put names and faces of the ones really getting hurt with this extremely arbitrary practice. I want to share the story of our twin babies, Luke and Nicolas, with you. This is the story of how they came into this world and how their lives were ended.

In 2017, I, my husband, my son, and my stepson were happily living in Toronto, Canada. I was expecting Luke and Nicolas, identical twin boys. The pregnancy was going smoothly, and regular ultrasounds showed both boys were growing normally.

On the morning of December 31st, I started to feel some irregular contractions that seemed to come out of nowhere. I thought that they would go away but they didn’t. We decided to go to the hospital to get checked by a doctor. When he came in to our room he said that I was already fully dilated and that Luke and Nicolas would arrive that day. He told us there was no way to prevent their birth.

In that desperate moment, I was just hoping and praying they would be strong enough to survive and wondered how long their journey would be in the NICU (Neonatal Intensive Care Unit). The doctors then started an unexpected conversation about their gestational age, number of weeks along in the pregnancy, and then said they would not be able to resuscitate them. They kept repeating how bad their lives would be if they survived; they’d never be able to walk, talk, or see, etc. The doctors were trying to convince us that letting our babies die was what was best for them.

In that moment, we faced the heartbreaking and unjust realization that the decision about whether our babies were given a chance to live, was not actually our decision at all. It was already made. We were informed the “cut-off” for intervention was a gestational age is 23.5 weeks. Luke and Nicolas were just under 22 weeks according the incredibly imprecise gestational age estimation. My husband tried to fight for our boys and asked them to do something, anything. He said we’d be okay with whatever consequences that saving them would bring. They refused, over and over, and the conversation ended with them stating they’d provide no care for Luke or Nicolas.

After a few hours, labor came and our boys entered this world. Luke came first. He was very active and moving his arms and legs. While I was delivering Nicolas, I could hear my husband pleading for our babies’ lives; begging the doctors to do something. They simply ignored him and kept “doing their jobs.” The neonatal pediatrician wasn’t even in the room as they had been declared hopeless. Our sweet, loved, perfect boys were declared hopeless before they were even given a chance to fight for their lives. Nicolas came and they put them together in my arms. They stayed there, next to each other, until they passed about an hour later.

Yes, I am well-aware that their chances of survival were very small and likely included many challenges ahead. One thing is for certain, though. Their chances were NOT 0%. No doctor or hospital would deny care of a child badly hurt in a car accident, regardless of what their survival chances were. Likewise, many people receive intensive, costly treatment for end-stage diseases despite negligible chances of cure or prolonged life. They are given a chance. That’s all we asked for our boys, the chance that every human life deserves. 

Doctors should be required to attempt to save premature babies if that is the parents’ wish. If a hospital doesn’t have the resources, the mother and babies should be transferred to one that does. Of course, we recognize that this issue has more than one side. That’s the point. The only side that was given a voice in this matter was the one of the hospital’s; not our voice and definitely not the voice of our boys.Not involving parents in the decision is something we can’t and we won’t accept.

Doctors will never have valid statistics or improve the medical procedures if they don’t start trying to save babies under 23 ½ weeks. There are articles showing how very premature babies have survived (and thrived!) without major consequences. This only proves that gestational age alone should not be used for the end-of-life decision.

We know none of this will bring our sweet boys, Luke and Nicolas, back to us but if this can help to save just one baby, or at the very least give an option to his or her parents, then one day I can look back and know that their lives served a purpose. I can know that their lives saved another.

After what we experienced, we lost faith in the country and decided to leave Canada permanently to live in the United States, though we know some hospitals in the U.S. has similar medical protocols. Hopefully this petition can help to make a change and serve as a reference for all countries that currently use gestational age as the only factor to decide whether to intervene to save premature babies.

Here is what we are asking:

1. I ask you Dr. Andy Smith, CEO of Sunnybrook hospital, to remove the slogan "Where Impossible Becomes I'm Possible" from your hospital. We find it very disrespectful to us and all the families who have gone through the same situation that we have. The slogan is misleading to say the least. Clearly the impossible does not become possible at Sunnybrook hospital since in many cases, don’t even try in the first place.

2. I ask you Ruth Grimes, President of Canadian Paediatric Society, and Jackie Millette and Alana Vaughan, Guideline Development of Canadian Paediatric Society, to review the Guidelines for Intervention that should not be based on imprecise data of gestational age alone.

3. I ask you Christine Elliott, Minister of Health of Ontario, to open a conversation with hospitals, doctors and parents around this topic within the province of Ontario. Make sure parents’ wishes are going to be heard. 

4. I ask you Patty Hajdu, Minister of Health Canada, to review these guidelines in all provinces and states in Canada and in the U.S. 

5. Finally, I ask you, Justin Trudeau, Prime Minister of Canada, to use your power and political influence  to make this all happen.

 
Sincerely,

Parents of Luke and Nicolas

luke.and.nicolas@gmail.com