“We are going to lose Charlie (1.5), we just don’t know when”
Own image: Islean and Charlie
Only six weeks old, Charlie ends up in hospital with the RS virus. He goes home with a double heart defect, from which he will die. Mother Islean about hope, sorrow and the boundless mother’s love for her heart child.
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 had bought was pink,” says Islean. “We also only had a girls name. ‘Nice, Liz’, said the nurse, ‘but it really is a boy’, when Charlie was born.” He has a very small penis, which was missed on an ultrasound. “Of course I was shocked, you don’t expect to suddenly have a boy. Still, I immediately thought: as long as the baby is healthy.”
Ailing health
But Charlie is ailing and has to stay in hospital for two weeks. “Charlie wasn’t drinking, so he had to be tube fed. 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?” But nothing crazy comes out of the test. “On the last day he gained a little weight, just enough to go home.”
Charlie doesn’t drink at home either. “He didn’t understand what to do with a bottle or he was too tired to drink.” Still, Islean isn’t worried yet. “Funnily enough, I saw in him the perfect baby. He slept a lot, hardly ever cried. ‘You don’t have a child with it,’ my husband and I joked back then. With Colin, our eldest son who was then two years old, it was different.
“Funnily enough, I saw in him the perfect baby. He slept a lot, hardly ever cried.”
Six weeks later: Charlie is sick, infected by his big brother. “The way it goes with children, I thought at the time. But he coughed and spit a lot. I thought about the RS virus, but the doctor only had a hole at the end of the day. The assistant probably also thought: another overprotective mother with a child with a snot nose.” Still, Islean feels she must do something. Not at the end of the afternoon, but now. “Very strange, but that feeling was so strong. I compared Charlie with pictures from a few days before and it seemed like my child was looking more and more gray.”
Hopital
Islean listens to her mother’s gut and goes to the nearest hospital, hoping to be reassured. But panic reigns there. “His oxygen level was way too low. I asked: are you okay? “I don’t know,” said the doctor. At that moment, the ground dropped from under my feet. I didn’t expect that answer.”
Islean and her husband end up on a rollercoaster. “Charlie had to intubated that failed three times. Really horrible, he was still so small, barely three kilos…” She and her husband wait in the hallway in suspense. “We thought the RS virus was the worst, but that turned out to be just the beginning. 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.
Rare deviation
Charlie is found to have a rare and serious heart defect ALCAPA (Aberrant Left Coronary Artery from the Pulmonary Artery) in which one of his coronary arteries is not connected to the pulmonary artery. As a result, his heart is pumping too much. Islean: “They were able to divert the vein with a major operation, but the RS virus made Charlie too weak.” The boy has to recover first. “Scary, because as long as Charlie could not be operated on, he was a ticking time bomb. His heart almost gave out.”
In the end, Charlie is operated on after all. With success, it seems. “But during the checkup, a few days later, his heart is still much too big.” Also a congenital defect, it turns out. “A rare abnormality in his chromosomes, so rare that the NIPT incidental finding test couldn’t find it during pregnancy.” His large heart, but also his small genitals appear to be characteristic of the condition.
“As long as Charlie could not be operated on, he was a ticking time bomb.”
Blur
Islean, her husband and eldest son (then 2.5) experience the period that follows in a haze. “It was like living two lives. At home and in the Ronald McDonald House that you only know from the news. For my eldest, life went on as usual. Nice, a ball pit, he thought. Of course he didn’t realize what was going on. Good thing, too.”
The family goes in hospital and out of hospital. Operation in, operation out. “Charlie’s heart stopped itself for a while, he was resuscitated for half an hour … but then he was back.” After five months they hear the news that the doctors can no longer do anything for him. Charlie is put on a do-not-resuscitate policy and palliative care at home. “No one knows for how long.”
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