Willum’s story

On 20th November 2016 in Singapore, we became parents to another beautiful little baby boy – Willum.

After a normal birth, the second night (when Charlotte was still in hospital with him) he started having cold sweats and being non-responsive. The nurses came and took him away for examination and quickly found out that his blood sugar level was VERY low! So he got a Glucose injection through the veins in his arm and was transferred to the intensive department for further observation.

We were then told that low blood sugar levels are usually something all babies get in the first 48-72 hours after which it then stabilizes on its own. Some babies need a little longer – about 10-14 days so we just had to be patient … So we went back and forth between hospital and home while trying to make sure that big brother Alfred’s everyday was reasonably normal. Willum would have to be fed every 3 hours to help keep the blood sugar levels up, but it also meant they had to do blood sugar level tests every 3 hours, around the clock! Charlotte was as much as possible at the hospital during feeding times and expressed milk as well. Willum also received injections of Glugacon a few times to help stabilize his blood sugar levels.

After 11 days without being able to turn down the Glucose injection, the situation turned more serious and we agreed with the doctors to give him medicine that, according to them, would work in 9 out of 10 cases (Diazoxide). They started him at the lowest dose and after 8 days of medicine (3 of the days at the highest dose) they concluded that it did not work either… 🙁

Therefore, we got transferred to another hospital (KK hospital) in Singapore, where they had a team who knew a little more about Willum’s rare condition. When we arrived there, the professor gave us a very detailed overview of what was wrong with Willum – he had the opposite of Diabetes as his pancreas produced too much insulin – the reason, a gene mutation! The next step was therefore to try a new medicine (Octreotide) and at the same time conduct a gene text so the doctors could determine where the mutation had come from and what kind it was.

They started Willum on the new medicine injecting it every 6 hours and it had an effect! Willum’s blood sugar rose VERY quickly… However, only temporarily, because after a few days the effect was gone and he still needed large quantities of Glucose injections through the drop. So now, the only way for him to possibly get cured was an operation, where the doctors would remove the part of the pancreas with the mutation.

The results of the gene tests came back in the middle of December (they had be sent to a special laboratory in England) and they showed that it was a gene mutation and it was likely only part of his pancreas that was affected (vs. in some children where the entire pancreas is affected). The disease is called “Congenital Hyperinsulinism” and is extremely rare – 1/50000 newborns, i.e. in average one per year in Denmark or Singapore. In fact in Singapore, they last had a child with this disease 4 years back…

However before surgery, Willum needed a special PET scan so the doctors could figure out exactly where the mutation was situated. BUT, the isotope (the tracer / radioactive material) they needed for the scan, could not be made in Singapore … Therefore, we asked the Singaporean doctors to recommend the best hospital in the world to get both the scan and surgery?

They said that 1st priority was CHOP in Philadelphia, USA, the largest center in the world for hyperinsulinism. 2nd priority was Odense University Hospital in Denmark or GOSH in London. And then the choice was easy – as Odense University Hospital had a specialist team and the professor there (Henrik Boye Thybo Christesen) specialized in this field and had patients from all of Eastern Europe, Russia and the Nordic region. So going back home and getting the special treatment Willum needed while at the same time having friends and family near was a no-brainer.

So on December 29th, all four of together with a Singaporean doctor and nurse flew to Denmark with Singapore Airlines , while Willum was still connected to the glucose drop. In Kastrup airport, Denmark, nurses and ambulance workers from Odense University Hospital picked us up and after a hand-over, drove Willum to Odense. Here we were received by Henrik and his team of highly professional and skilled nurses and doctors.

On December 31th, we are in isolation at the new hospital – Charlotte are hospitalized with Willum and I stayed at a rented apartment nearby with big brother Alfred.

When we talked to the professor after arrival, it dawned upon us just how serious Willum’s conditions was! Willum is subject to a series of tests and if Willum is ever going be cured we only know after surgery… But getting the scary details around potential side effects of his conditions such as brain damage, severe eating disorders, diabetes and side effects of the medicine, hit us hard! What if we do not come back home again with a healthy child…? Because there are no guarantees!

On January 5th, Willum’s PET scan was done and luckily only a small part of his pancreas (the tail) was affected. Therefore, on January 11th, the doctors performed the surgery and it went well! 🙂 One week later, they conducted a fasting test, meaning they turned off the Glucose injection to see if he could maintain healthy blood sugar leves by himself… and he could!!! Therefore he was declared cured and at the end of January 2017 we were again back in Singapore and could begin our life as a family of four.

Willum Sept 2019
Willum Sept 2019