Five-year-old Valerie was born with a multiple complex heart defect.

She was operated on several times in her young life.

Her mother lives day by day.

"I try not to think too much and do what feels right."

This article comes from AD Groene Hart.

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The life of the then 23-year-old Tessa Betam is completely turned upside down when a heart defect is discovered in the baby in her stomach during the twenty-week ultrasound.

Tessa and her husband Mark have to decide in four weeks what to do: terminate the pregnancy or prepare for the birth of a child with heart problems.

"You have to decide about your daughter's life," says Tessa in her hometown of Alphen.

And that is of course not an easy choice.

Not even because several doctors are involved with the couple.

"One says this, the other says something else. That shows how difficult it was for the specialists to say something about the complexity and the future. You actually need someone to tell you what to do. We suddenly had to think about quality of life and life expectancy. You have difficult questions that no one can answer."

Valerie, the five-year-old daughter of Tessa Betam, has a multiple complex heart defect.

Her life expectancy is unknown.

Valerie, the five-year-old daughter of Tessa Betam, has a multiple complex heart defect.

Her life expectancy is unknown.

Photo: Tessa Bertram

medical circus

The couple decides not to terminate the pregnancy and prepares for the birth of their first child.

Valerie was born on June 9, 2016.

Contrary to expectations, the girl is allowed to stay with her mother for half an hour after the birth.

Then the medical circus really starts and the girl is prepared for open heart surgery.

The first of three.

When Valerie is a week old, she is operated on for the first time.

The operation is successful, but complications arise.

In the 36 hours after that first operation, she will have two more operations.

CPR is needed twice and for days the life of the little one hangs by a thread.

"She has been kept asleep all this time. It was only a week and a half later that we heard her make a sound again for the first time. Two and a half weeks after the operation we were allowed to hold her for the first time."

Tessa Betram.

Tessa Betram.

Photo: Merel Klijzing

Valerie has another surgery when she's eight months old and when she's three she goes under the knife again.

Examinations, treatments, conversations with doctors and therapists.

The days of the young family are often filled with it.

Tessa, born in Alphen, calmly tells her story.

But that is not easy, she assures.

In recent years she was only in 'survival mode', as she describes it herself.

She suffered a burnout twice.

She could no longer do her job.

"I sometimes dream of making a documentary, I feel I have to tell you what it means to have a sick child in your family."

Impact

For this reason, the young mother (now 28) is also committed to the Hartekind Foundation, which funds scientific research into congenital heart defects (see box).

"So little is known about heart problems in children, I want to do my part. I have to keep telling my story. Few people understand the impact it has on our lives."

As an example, she indicates that most people mainly see Valerie in her happy moments.

"But as soon as the front door closes, I'm busy taking in an overtired Valerie. We know Valerie doesn't get old, so it seems like everyone wants to get the most out of her. Everyone wants to do something with Valerie, but she's "It is best to have a quiet game on the couch, or watch a movie together. Because you can't see her being so ill so badly, it's hard to explain the seriousness."

Valerie, the five-year-old daughter of Tessa Betam, has a multiple complex heart defect.

Her life expectancy is unknown.

Valerie, the five-year-old daughter of Tessa Betam, has a multiple complex heart defect.

Her life expectancy is unknown.

Photo: Tessa Bertram

Poor condition

On the one hand, that's also nice, Tessa admits right away.

"She lives a fairly normal life, also goes to school. It is very insidious that you do not immediately see something about her. But she cannot do much and has a wide range of complaints. Her right lung only works half, she is soon tired and can turn blue to purple."

"She is in very bad shape, her muscles are less well-developed. Moreover, she has been struggling with PTSD (post-traumatic stress disorder) since she was two. Going to a birthday party with her simply? She is often too tired for that, there are too many stimuli . Not everyone understands that."

For this reason, it was decided not to have Valerie photographed by a photographer.

It would cause unnecessary stress.

The photos accompanying this story were submitted by her parents.

Last year, Tessa walked 150 kilometers in a month, 100 meters for every child born with a heart defect that year.

In this way she collected almost eight thousand euros for the Hartekind Foundation.

She recently baked cookies with Valerie and earned three hundred euros for the foundation.

"In the walk, maybe 80 percent of the donations came from strangers, it was overwhelming and moving."

valerie.

valerie.

Photo: Tessa Bertram

Two years ago, Tessa and Mark had another daughter: Karlijn.

Since then, everything has doubled, Tessa indicates.

"What is it like for her to grow up in a family with a care-intensive child? I'm sure she gets something from the tension and stress surrounding treatments and examinations. We consciously build in moments for relaxation and fun things with the children It's also accepting what it is This is it The harder we fight the bigger it gets There are also weeks when Valerie's disease goes a bit to the background, then we also see how beautiful life is."

Self-protection

Karlijn, growing up, also confronts the couple with the limitations of the eldest daughter. "We now see what it is like to have a healthy child, we didn't know any better than that it was normal to stay in the hospital a lot. I feel that the bond with Karlijn is different. We had to let go of Valerie soon after birth "I know I'm going to lose her. I prefer to have her with me all day, but unconsciously you also distance yourself. That's a piece of self-protection."

The family lives day by day.

"Never in the future. I live very much on my gut feeling. Does something feel right? Then we do it. If it doesn't feel right, we don't do it. We don't know how old Valerie will get, but chances are she won't mature One doctor says she might be eighteen, another that it might stop at eight. Sometimes that overwhelms me, and I think 'what is the quality of life anyway?'

We always fill it in for her."

valerie.

valerie.

Photo: Tessa Bertram

Valerie now attends a special education school in Leiden for four and a half days.

It takes her more than forty minutes by taxi, a battle of attrition.

Partly for this reason, the family will move to Apeldoorn at the end of this year.

There the couple has found a house with a bedroom and bathroom on the ground floor, so that Valerie no longer has to climb stairs in the house.

Close to the new house is her new school.

Long taxi rides are therefore a thing of the past.

"It's exciting, because we're starting again. With everything we carry in our backpack."

Where possible, Tessa wants to offer her daughter a 'normal' life.

"I don't want to put a mark on her, we want her to participate in society as much as possible. I believe that we are the very best parents for her and that we are doing well. When I was pregnant I was often told that a child parents and that you get what you can wear. 'I don't know if we can bear this at all,' I thought. But we do our best and that's good enough."

Hartekind.nl/light

They are cold numbers, numbers that don't let go once you know them.

A heart defect is the number one cause of death in children up to the age of 15.

In the Netherlands, a child dies of a heart defect every two days.

Every year fifteen hundred children are born with a heart defect.

The Hartekind Foundation is committed to these children.

The foundation aims to disappear from the top 3 of the most common causes of death in children within ten years.

This requires research.

In this way doctors learn to better understand, treat and prevent heart defects, complications and residual abnormalities such as cardiac arrhythmias, brain damage and developmental problems.

To achieve this goal, 4 million euros per year is needed for research into heart defects in children.

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