Charlie’s story: ‘When something sweet leaves us, the love remains’

In February we shared the story of Charlie who ends up in hospital with the RS virus at six weeks. It turns out he has a double heart defect. Charlie passed away last week. As a tribute – to him, his parents and brothers – we share his story again.

From the very first moment, Charlie has been a special child. “Charlie would actually be a girl. Every ultrasound they knew for sure, everything I bought was pink and we only had a girls name. When Charlie was born the nurse said ‘Nice, Liz, but it’s really a boy’.” He has a very small penis and that was missed on an ultrasound. “I immediately thought: as long as he is healthy.”

Perfect baby

But Charlie is struggling with his health and has to stay in the hospital. “Charlie didn’t drink and had to tube feed. They also examined him there for the first time. Was he really a boy or also a girl, did he perhaps also have a uterus?” Nothing crazy comes out of the test and on the last day he gained just enough weight to go home.” Once home, Charlie doesn’t drink. Still, mother Islean isn’t worried yet. “Funnily enough, I saw in him the perfect baby. He slept a lot, hardly ever cried. It was different with Colin, our eldest son who was two years old at the time.”

“Funnily enough I saw in him the perfect baby; he slept fell, hardly ever cried”

Some six weeks later, Charlie is infected by his big brother and is sick. “He was coughing and spitting a lot. I thought about the RS virus, but the doctor only had a hole at the end of the day. She feels she must do something. Not at the end of the afternoon, but now. “That feeling was so strong.” Islean listens to her mother’s gut and goes to the nearest hospital, hoping to be reassured. But no. “His oxygen level was way too low. When asked if it would be ok, the doctor gives an answer that she did not expect: ‘I don’t know.’”

Major operation

Islean and her husband thought the RS virus was the worst, but that turned out to be just the beginning. “Charlie had to be intubated, which failed three times. Really horrible, he was still so small. On the x-ray (which was made to see if the intubation tube was finally in the right place, ed.) They saw that Charlie’s heart was much too big, 3/4 times as big as it should be. He appears to have a rare and serious heart defect in which one of his coronary arteries is not connected to the pulmonary artery. As a result, his heart is pumping way too hard. Islean: “They were able to divert the vein with a major operation, but the RS virus made Charlie too weak.” He needs to get stronger first. “Scared. As long as Charlie couldn’t have surgery, he was a ticking time bomb. His heart almost gave out.”

Eventually Charlie is operated on and that seems to be a success. Just a few days later, they discover that his heart is way too big. It also appears to be a congenital defect. “His large heart, but also his small genitals appear to be characteristic of the condition.” The family goes into hospital, out of hospital and all kinds of operations follow. “Charlie’s heart even stopped for a while, after which he was resuscitated for half an hour. But then he was back.”

‘Just bad luck’

After five months, the family hears that the doctors can no longer do anything for him. The chance of this deviation is only 1%, Charlie has ‘just’ had bad luck in life. He is on a do-not-resuscitate policy and palliative care at home. There, the family tries to enjoy every moment together as much as possible. “The little things you do with a baby are the big things for our Charlie. Charlie it may be the worst lottery ticket, but I never wanted to miss it.”

First vacation

Charlie passed away on June 19. “Actually, it had been going on and off for a long time. We didn’t know if he would make it to the next day. We rented a bouncy castle for his second birthday, but we were actually afraid he wouldn’t make it. Fortunately, it was, just like our first Ascension holiday. He had a good experience with that.”

“Fortunately, he experienced our first holiday nicely”

They have now said goodbye to their dear Charlie. “Especially for Father’s Day, he stayed with us for a while. But when I went to give his medicine around 11 pm, I felt everything that he was not doing well. I decided to put Charlie in bed next to me. He lay next to me, breathing heavily with occasional soft moans. I didn’t sleep and tried to make it as nice as possible by tickling his head and kissing his not-so-chubby cheeks. At 4 a.m. it became quiet next to me. And I knew right away, he’s gone. I was there for him until the very last moment.”

“I was there for him until the very last moment”

Love remains

Saying goodbye to Charlie was a day with a smile and a lot of tears. To give the loss a place, to process their grief, but also to be with the other children, the family hitched up the caravan and left for a holiday destination. “We booked, I gathered some stuff and threw it in the caravan. We left.” With Charlie in their hearts. “When something sweet leaves us, love remains.”

Islean sells lucky charms with Het Winkeltje Voor Charlie to raise a budget to illustrate and print a children’s book about the family.

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