The small Thea Liv McDuff-Robidoux will celebrate its third month of life, and his first Christmas, surrounded by their parents, but also members of the department of the intensive care unit of the pediatric hospital in montréal, where she is not output since the day of his birth.
December 21, 2019 16h59
Spend Christmas in intensive care for three months
The canadian Press
MONTREAL — The small Thea Liv McDuff-Robidoux will celebrate its third month of life the 25th of December, she who is born at the CHU Sainte-Justine on September 25.
It will celebrate this anniversary, and his first Christmas, surrounded by their parents, but also members of the department of the intensive care unit of the pediatric hospital in montréal, where she is not output since the day of his birth.
“We see everyone who lives the magic, our whole family is happy, all the people in the streets are smiling, there is the magic and frenzy of the Holiday season, but we have a little bit of misery to the living,” admitted the mother of Thea, Vanessa McDuff.
Ms. McDuff and her husband, Jonathan Robidoux, learned as early as the 21st week of pregnancy that Thea was suffering from a diaphragmatic hernia, a congenital malformation which means that the left portion of his diaphragm is absent; as a result, his stomach, his intestines and part of his liver, are mounted in its chest cavity, preventing her lungs from developing normally.
The lung capacity of Thea at this time is only 17%, and his chances of survival are estimated to be about 20%. At 28 weeks of pregnancy, Ms. McDuff goes to Toronto for a surgical intervention in utero experimental, during which a balloon is installed in the trachea of Thea to assist in the development of his lungs. Seven weeks later, the balloon is removed and the couple returned to the house. The lung capacity of Thea is then 40%.
Five days after her birth, the surgeons attempt to repair the hernia discover that the problem is even more serious than previously thought. Forty-eight hours later, the state of health of Thea degrades rapidly and it is sent to the intensive care unit. Some employees still question whether its survival.
“We passed close to losing it a few times, but this time it is stable, it will get better and things are going well, said Ms. McDuff. We discover a little girl super smiling, super charming and all, but this is far from the ideal. There was always this background thought, we don’t want to be too happy or too sad no more, because we want to enjoy every moment, but it is certain that Christmas will be more difficult.”
Twelve years to the intensive care unit
The 12 years of her career as a nurse at Sainte-Justine, Bryan Provost has been in the department of intensive care, where he is currently Head of care and critical care.
Carols in the company of small the sickest patients in the hospital, he has seen more than one.
“We try to make sure that this is very human, that we forget a little that it is in an environment of care, he said. We try to minimize the impact of all the treatments that we must do, to allow them to have their family moments, he could even dress himself, to be able to take a meal with people they know and they love. Often, the nurses and nurses who work are going to participate and get involved, because we know very well the families.”
The preparations begin a few weeks before Christmas. The volunteers of the hospital are active, events are organised and gifts are planned. A few days before Christmas, a fund created by the family of a child who has spent a long time in intensive care before dying offers parents the opportunity to share a meal with their loved ones and for a moment forget their everyday reality.
The rules relating to the visits are relaxed. The parents are usually present with their child, unless they are prevented by geographic distance or by other family obligations.
“When parents are not present, the nurses are even more present with these kids,” said Mr. Provost. If we can get them out of their room, have fun with them in the corridors, it is something that really makes a lot. […] I’ve even seen a few times nurses organize to that you can do a FaceTime with the parents for the family to see the child who had remained to care. [We try] to offer as many things as possible to make it a little less difficult and remove the sense of guilt that these families may have.”
The Christmas traditions of the couple McDuff-Robidoux resemble usually those of thousands of other families in québec: on the move a lot, we take leave of all the world to see our loved ones, we go to the cottage and take in the air.
“I am 25 years old and I still have that little moment, the morning of the 25th [December], to discover my gifts under the tree, my parents, and this year I would not have had it and my daughter does not have, said Vanessa McDuff. [The traditions] are going to be put on the back burner this year. We hope next year to be able to do, we think we can do it. The output is not so far away, even if there are still several steps to do before you can leave. We are still quite optimistic.”
Even if her partner and she are proof of a serenity and a courage admirable, the young woman admits that they are a little “angry” to be still in intensive care three months after the birth of Thea.
“We thought maybe not as it would be too long, we thought we may be back home for Christmas, she confessed. It is difficult, this is not the ideal situation, we would have liked it to spend his first Christmas at home with the family as a small normal family, but it is certain that the care [intensive] do everything we can to make it as comfortable as possible and that this is not the worst time of the year for us.”
The couple will spend the three days of Christmas to the sides of Thea. He will have possibly the room of the parents for bruncher with loved ones came to celebrate a little with him, in the circumstances, to say the least special.
“It is certain that this will not be the Christmas that we are used to, said Ms. McDuff. We will try to make it as wonderful as possible. We bought a little dress for Thea. We are going to be fine. We are going to do family photos. We will try to be able to keep all of the memories to be able to say to him, “Look, Thea, this is what you did at the hospital, it is not as flat or as dramatic as that.” It is fun to have these little memories here and say that the first Christmas of my baby has been passed in an atmosphere not so sad.”
“Christmas care, it is the hope, the courage and the love of children. The magic is different, but there it is ”
Vanessa McDuff, mother of the little Thea
A personal choice
Some employees rise to the outset hand when we solicit volunteers to work on Christmas.
“There are people who choose to be present at Christmas because the atmosphere here on the unit and what we do Christmas like a lot to some employees, they are very invested in the well-being of patients and in what we offer,” explained Bryan Provost.
It is part of those who have passed this magical time in the corridors of the hospital.
“It is certain that a part of me is a bit bored of my family, because my family to me is far away and it is difficult to imagine away from her family, but when compared with what these families live, and in what situation they are placed, it is a small evil compared to what we can perceive in the other,” he said.
The recognition that employees receive for patients and their parents makes the experience all the more enjoyable, ” he adds. The simple fact of being included in a family photo makes hot in the heart, for example.
“I’ve always enjoyed it and it was always very rewarding to receive recognition of those families, and at the end of my day or at the end of my two days, I kept saying to myself that once again I had done something great and beautiful, and that it was going to be me one day to come back,” said Mr. Provost.
“Like the pros”
When we asked Ms. McDuff and Mr. Robiboux how they are thinking about their next Christmas with Thea, in 2020, they are slow to respond. Maybe a trip to Disney World, end up let down.
But, in fact, all their energy is focused on the present moment, in the hope of being able to bring their baby home at the beginning of next year.
“It is necessary to develop our small traditions to us, our little family, to see how it’s going to work, said Ms. McDuff. Simply return to the house will be different from what we had imagined […]. It’s going to be more difficult than we would have imagined, but we will try to create beautiful traditions for us, which she will remember all her life and she will be able to say, “wow, my parents have done so much of it as pros, they have so much made my childhood wonderful”… This is our goal.”
A few hours after our interview, Ms. McDuff was sent to The canadian Press an e-mail touching that testifies eloquently of the resilience of the couple, the attitude that allows him to face this ordeal.
“We will not have the chance to be home for Christmas, but we have to have our daughter in life, she wrote. It is one of the miracles of Sainte-Justine. She is a quiet baby, intelligent, and curious. She loves walks in the stroller in the hallways of the intensive care unit and the guffaws in front of his monkey orange. We could not be more grateful. Of course, to spend the Holidays in the hospital is not perfect, but if it is the price to pay for the next family, either.
“Christmas care, it is the hope, the courage and the love of children. The magic is different, but there it is.”