Jop’s (2) artificial limb doesn’t hold him back one bit

It’s every parent's worst nightmare: a seriously ill child. Bertil and Marloes saw their youngest son Jop, just 1.5 years old, fall increasingly ill in a short period of time in the spring of 2019. The diagnosis: a streptococcal infection and multiple complications. His chances of making it through were slim, but, fortunately, he recovered. As a result of the bacterial infection and the complications, though, his lower leg was amputated in 2020. He now wears an artificial limb and has become the energetic troublemaker he was before his illness.

 

Marloes: “When Jop first developed a fever with little blisters in his mouth in the spring of 2019, our GP first thought he had a virus. Soon, though, the illness worsened: Jop wasn’t drinking enough, he had a bad fever and he wasn’t having enough wet nappies.” When Marloes and Bertil discover a large bump on his head on the morning after Whit Sunday, they take him to the hospital. They think Jop might have slipped and fallen, but because he’s been weak and inactive for days, it’s an unlikely scenario. Jop is allowed to go home again, where the situation worsens still. He is admitted to the hospital and blood tests show that his inflammation levels are elevated and that he is dehydrated. An IV drip with antibiotics and fluids should help him recover. A CT scan of his head shows that there is fluid in the bump, but the cause is unclear. At night, his condition worsens again, his blood pressure drops dangerously and his heart rate rises.

 

Touch and go

In the early morning of 12 June, it's touch and go: Jop has septicaemia, his blood values have deteriorated and the antibiotics don't seem to be working. After consulting with the hospital in Groningen (UMCG), Jop is sedated in the operating room. Marloes: "They urgently wanted to transfer to the hospital in Groningen, but just before the specialists arrived to accompany him to the ambulance, the situation changed. All of a sudden, they started the CPR protocol, as everyone jumped in to stabilise Jop and save his life. His condition, as it turned out, was too unstable for an ambulance, and as he was urgently flown to Groningen University Medical Centre in a helicopter, we followed in a police car.”


Bacteria and complications

In the end, Jop is diagnosed with severe septic shock caused by Streptococcus A. Marloes continues: “When he arrived at the ICU, the OR team was called to perform surgery on Jop and connect him to the heart-lung machine. At that point, the specialists did not know whether he would survive, but they did know that this was his only shot. The same evening, Jop was hooked up to a dialysis machine to support his kidneys, which were struggling to cope with the septicaemia. This was also when we started to worry about his leg, which was blue, cold and spotty. All these indications pointed towards compartment syndrome, a disruption of the blood supply caused by a swelling. Jop was operated and his leg was opened up from the knee all the way down to the ankle, and as his muscles immediately swelled outwards, it became clear that there was a lot of pressure on his leg. However, the fact that all his muscles still had a healthy colour was a hopeful sign. Jop’s situation improved a little every day and after a week, he was disconnected from the heart-lung machine and from the respirator. Despite the fact that he was very weak and had to be pulled back from the brink, he showed tremendous willpower and fighting spirit.”

 

Major leg damage

After three weeks in the ICU, Jop is transferred to the nursing ward where, with some ups and downs, his condition gradually improves. His leg would remain open until 11 July, the date of the last of 4 surgeries to close his leg with a skin graft taken from his head. His leg, however, is crooked and has a deviation, although the doctors expect that these issues can be resolved with physiotherapy. After more than two weeks, Jop is allowed to go to the local hospital in Hardenberg to continue his recovery, after which he can finally go home.

 

Another bacteria, another operation

Jop’s leg, though, remains problematic. His knee his hot, he’s constantly feverish or cold and he isn’t doing very well. Thinking back, Marloes remembers: “The plan was to straighten out his leg with a corrective cast, but the specialists opted against it because Jop still had a fever. In November, an MRI scan revealed that he still had a bacterial infection in his bones. Another surgery followed two days later, with the specialists removing a lot of connective tissue to straighten out the leg. To fight the bacteria, a different one from the one that made him so ill, he was given antibiotics. Although Jop was sent home with a splint, his leg was just as crooked as it was before within 5 weeks of the splint being removed.”

 

Second opinion

By mutual agreement, Marloes and Bertil go to the Erasmus MC in Rotterdam for a second opinion. She explains: “That’s when they gave us the bad news: the bacteria wreaked such havoc on Jop’s leg that amputation seems to be best course of action. There was little left of the knee and his growth plates were severely affected. Besides, there was already a considerable length difference between the two legs, not to mention the fact that the affected leg was remarkably blue and cold.”

 

Jop remains cheerful and upbeat

Jop has now recovered fully from the intensive episode in 2019. He had just started walking before he got ill, and he now walks with a stroller or crawls on all fours. He never complains, although he can get a bit frustrated at times when he wants to do more than he is able to. Overall, he is cheerful and upbeat.

 

Preparing for amputation

“Before the surgery, we read the book “Grandpa and Sophie” to Jop and his brother Stef (4), Marloes continues. “In this book, grandpa has his leg amputated, and we thought it would be a good way to prepare Jop and his big brother for what was to come. We also showed them pictures of people with one leg and explained how Jop’s leg was ill and would never grow properly. We looked at the leg together a lot and Stef understood that it wasn’t doing very well. Jop was too young to really understand. When we asked him: "What's wrong with your leg?"
Jop would say: “It’s a little ill.”
"What's going to happen to it?"
“They’re going to remove it. Bye bye leg," and then he would wave. We cut off the leg of one of his stuffed toys and asked the people in the hospital to bandage it just as they would bandage Jop’s leg. 

 

Tough time for parents

“It was very difficult for us as Jop’s parents. We saw terrible things and at times we just didn’t know whether he would pull through. Seeing your child suffer and fight for his life like that is heartbreaking and leaves you feeling powerless. When he opened his eyes again after about a week and a half, we were elated and had cake to celebrate. We’re very sad that he’ll have to live life with one leg instead of two, but we couldn’t be happier to have the old Jop back, regardless of how many legs he has. As one doctor told us at the time: “He had one foot firmly planted in this world”, which says a lot about Jop’s fighting spirit. There were plenty of sad times, but we also had our fair share of laughs along the way. Family and friends visited us every day and we couldn’t have made it through without them.”

 

The big brother

Jop’s big brother Stef was 3.5 years old when he went to Groningen. Marloes: "Grandpa took Stef to the babysitter, where he was allowed to stay as long as needed. We called him every day, but he’d often be too busy to talk to us. After four days, he joined us in the hospital for a few hours, although we didn’t take him to see Jop, because he was still hooked up to the heart-lung machine at the time. He did ask about his little brother right away, so we showed him a picture of his lovely little face. Stef then came to stay with us twice more for two nights at the Ronald McDonald House, which was fantastic, because we missed him terribly. After two nights, though, he had had enough. He even went on holiday with the babysitter and had a whale of a time. We’re eternally grateful to her for what she did for us.”

 

A quick learner

Jop now has an artificial limb and he can walk, play and live with the rest of the family and at the daycare centre just like anyone else. He got used to it very quickly. “We didn’t know at all what to expect after the amputation”, Marloes remembers. “There’s not a lot of information out there about children with an amputation, which is one of the reasons why we were so eager to share our story. We didn’t have a clue as to what his artificial limb would look like and what we could expect from the rehabilitation process. Fortunately, we got excellent help from the Beatrixoord rehabilitation centre, which is affiliated with Groningen’s University Medical Centre, and the OIM in Haren. Amputations in children this young are very rare, but we’re incredibly happy with their efforts. They’re always there for him and consider our input in determining what’s best for his recovery. At the moment, he’s got a fairly basic prosthesis with a rigid knee joint. When necessary, we help him bend his leg, so he can sit in a bike seat, for instance. Because Jop is growing, his prosthesis has already been adjusted once, and the process couldn’t have been easier. We see his rehabilitation doctor every 6 months and she’s very satisfied with how Jop his doing.” Within 3 weeks of getting his artificial limb, Jop got a second shot at his first steps, under the watchful eyes of dad, mom and his big brother Stef.

 

Back to being an active, curious child

“He’s very playful and he’s back to being the active, curious child he was before. We’re so happy to be running around after him again. The first time he threw a tantrum in a shop was so much fun! For over a year, we’d bring him along in the pram with us whenever we went into town, and now he can finally walk with us. Other than that, we do everything a family would normally do: we go cycling, swimming and take the kids to the playground. He loves being active, so it’s very easy to get him to come along. We don’t know how things will be when he grows up, of course, but he’s doing just fine for now. His artificial limb isn’t holding him back one bit. We’ll just have to wait and see what happens from here.

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