Owen was born on the 21th of December 2015 because of the problems we had with the delivery of his brother Vigo we choose a caesarean.

At 11:25 our son was born 4750 grams a big boy!

 

 

Owen had some start-up problems with his breathing and shortly after we found out that he had low blood glucose.

Through a infusion Owen got extra glucose 10% but that wasn’t enough to keep the blood glucose at a normal level so the doctors inserted a umbilical line with 50% glucose.

Several medical examinations started why his blood glucose was so low. We found out that there was a medical term for his situation Hyperinsulinism.

We also started with the medication Diazoxide and the feeding was done with a feeding tube.

After 6 weeks neonatology unit we finally went home on 28-01-2016!!  2 weeks of military precision followed… feeding 7 times a day through a tube 3 time a day diazoxide 2 times a day hydrochloortiazide and checking Owens blood glucose throughout the day….a living hell!!

On the 11th of February we went for a check-up in the hospital and the doctor told us that Owen had to stay, the Diaxozide didn’t have the result he needed.

The doctor also had the result from the DNA check and found out that Owen had mutation gene ABCC8 from his daddy.

The diagnose was Congenital-Hyperinsulinism a rare disease that only 1 in 50000 baby’s have.

We were told that we couldn’t stay in Rotterdam but had to move to another hospital to start with a other medicine and to have a Pet-scan to see if the mutated cells were diffuse or focal.

 

 

On the 23th of February we went from Rotterdam to Groningen were we directly started with the new medicine octreotide by a infusion after several problems with the infusions we started with lanreotide on the 29th a long term medicine good for 4 to 6 weeks.

Owen also got a sensor to measure his blood glucose continuously and alarmed when it was low.

On the Friday 18th of March the PET-scan took place and on Monday we got the result it was a focal form and it was curable….what a relief!!

Now we just had to keep Owen stable for the operation on the 11th of April we went to Greifswald Germany were the operation going to take place on the 19th

In the week before the operation Owen had a real back fall and became very instable he had the lowest blood sugar level ever 2.1!! 

 

 

The big day came and after a very long operation (6 hours) professor Barthlen called us to say that he thought that he removed all of the bad cells now we had to wait to get stable again!

On the 2nd of Mai Professor Barthlen declared Owen cured and on the 3rd of Mai, after 4 and halve months we drove home with a very happy baby without any medicine or strings attached!

 

 

Now Owen is almost 6 months old and he lives like a normal baby we even don’t measure his blood sugar anymore!!

We would like to thank all of the medical people, friends and family who helped us through this rough times it’s been a long journey but it was all worth it!!!!!!!

With thankful greetings from Holland Ray Queen Vigo and Owen

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