Maternity hospital, Moscow, mid October 2012

Our story begins from Anastasia's birth 19th of october in Moscow. She was born very big for 8-month-pregnancy term, her weight was 4,4 kg and 56 sm height. From very birth she was taken away from me (her mother), that of course was a kind of shock for my relatives to find out and to realize that Anastasia is in an intensive care. Recognizing that she's got big problems appeared only on the next day, that her sugar level fell down to 1,0, before that all doctors thought just that here was something wrong with her arm after difficult delivery (very fast - just 5 hours!), that's why they took her away from me after her birth. In the intensive care we met a good doctor  Ms Nasekina, we are very thankful — she saved her life! Nobody knows at the begining that a child has got any other diseases accept arm damage, by spontanious decision to check sugar level of Anastasia blood the doctor started to give her glucose infusions very soon and evoided continios hypoglycemia episodes! These days in the Maternity hospital was the worse days in my life, i saw my daughter everyday with all these tubes and nobody knows what exact disease she has, it was just an intensive care in the maternity hospital and our doctor supposed that we have some kind of the rare accumulation or exchange disease which can be provided by genetics defect.

 

University of Pediatrics, Moscow, November-December 2012.

But for a certain diagnosis we went to the university of Pediatrics in Moscow in 12 days after the birth, we spend in the University (which is also a full-time hospital) the whole month, we had a great doctors team there (pediators- Yazig Galina, Evdokimova Anisia Etc). They and doctor Melikyan told us that we have very rare disease hyperinsulinism on the next day, in the hospital practice they have only one child with this disease. Then they took our blood for investigation, finally it was found out that we have diffuse form of illness.

At the hospital in Moscow we started with diazoxide which didn't work, and then find the balance with glucose infusion (40% glucose with the speed 3-4ml per hour) and octreotide but it was impossible to take her home like that, we needed operation for sure, in our country it's subtotal pancreas removement only, which in future leads to diabetic very hard insulin-dependent form. Of course we wanted firstly to do everything to prevent it.

 

We luckily found Collaborative Alliance on Congenital Hyperinsulinism site with e-mail adress of Prof. Barthlen the Head of Kinderchirurgie in Greifswald hospital. I wrote him our short story and we got fast reply in one hour, that was so in time for a mother who worries every minute about her child.  We were lucky that in the beginning of December he went for a workshop in Moscow, so we could talk to him personally. Then we sent our blood for further investigation in Magdeburg, and got an answer within 1 week (very fast!), but unfortunately diffuse form was confirmed. That time Anastasia couldn't leave the hospital, couldn't get home, it was simply impossible, she was still getting continiously 40%-glucose infusions, maximum dose of octreotide coming intravenously and in spite of that having sugar falling down! It made me feel scared just to imagine how my husband Alexej and me at home would manage without doctors. We were endless gratefull for Prof. Barthlen for keeping in touch with us everyday by email this time at the hospital in Moscow, for me as a worrying mother it was important, thank him for his patience, because sometimes I was intolerably desparate with the situation and only this person could find the proper words of support. After the blood investigation Prof. Barthlen told us honestly, that in our case it's really hard to predict anything in case we would do surgery on a part of pancreas there would be just a little chance for us because all her pancreas produced enourmous amount of insulin. But still they can investigate with Pet-CT the most active parts of pancreas and could remove these focuses. He invited us in Greifswald and of course we wanted to try everything to help our daughter!

 

We would like to thank Olga and Siegmar Kruger, they were very kind and helped us to collect all documents for getting visa and international passports as fast as possible, also they translated all our  case records from the hospital to german language and entered all the correspondence with clinic in Greifswald.

 

And of course nothing would be possible without the help of charitable fundation PODARI ZHIZN (Подари жизнь/Gift of the Life) in Moscow. Lots of thanks for the great people who work there for their countenance, big hearts and their support.

Leaving Moscow, 10th of December 2012

We went to Berlin (my husband, 2 Anastasia's grandmothers, Anastasia and me)accompany with Resuscitator on 10th of December, but we faced unpredictable trouble, like a bad luck! Our flight in Moscow was delayed for 12 hours, it was horrible, such a long time at the airport with an intensive care, with all that perfusors (we still needed continious glucose and octreotide infusions) and feeding every 3 hours with gastric tube, and checking glucose level with Accu-chek every hour, not to miss the start of fast glucose falling. Lots of thanks for Dr Popov Pavel, resuscitator, for his patience with us and keeping everything under control during our long trip!

Finally we came to Berlin where Prof. Barthlen met us right from the plane with the ambulance car, inspite of our delay, he did everything that we could feel safe and under the control!

Sana Klinikum, Berlin, 10-19th of December 2012

The next day after coming to Berlin we were supposed to have Pet-CT investigation. Our bad luck followed us still and the next day we were told that our nuclear was failed to produce, we had to wait one more week in Berlin, because the proper nuclear were produse only once a week. We stayed in Sana Klinikum in an intensive care. Due to our mothers staying with us we could devided days and nights with Anastasia and could have  some free time for sightseeing, so this time of waiting ran very fast. Fortunately in a week we got Pet-CT diagnostic which showed that there is 3 big focuses one in the tail, second smaller in the body and third is in the head of pancreas. Next day my daughter and I accompanied by Prof. Barthlen went to Greifswald where the surgery should be performed. Our mothers and my husband followed us by car.

 

University of Medicine, Greifswald, from 19th of December till 10th of Januar 2013

After Pet-CT Prof. Barthlen discussed all possible ways of operation with his colleagues and  during the consultation they decided to make laparoscopy performance and try to cut tail and a part of the body(all together 40%) and hope that it would be enough. Of course nobody could forecast how pancreas would behave, they understood that it's needed to cut quite a lot, but not to much to avoid diabetes. We were inform about the possible resultes of the operation:

1 - the best possibility, like a miracle - the disease could disappear itself after operation, if there will be the balance between the rest part of pancreas and insulin.

2 - we would need medical treatment, octreotide, but glucose infusions would not be needed

3 - we would need a second operation to cut the head, which we left untouchable.

Sorry, Anastasia, but operation had to be performed anyway!

The operation was performed very professional and successfull by Prof. Barthlen and Anastasia was getting better on the third day, we hoped that we would be treated totally but that would have been too sweet for us)). We needed octreotide. We started using the pomp, because it's not so painfull for Anastasia as 5-times injections.

 

After operation we made an acquaintance with Dr. Schroeder she lead us as an endocrinologist. She was very polite, kind and attentive. She helped us to count and select proper amount of octreotide  for the pomp and taught us how to use it. Even now we keep in touch with Dr. Schroeder for regulating the doses and sending her our record of daily glucose indicators. She elaborated special feeding for Anastasia, by counting callories and mixing different milk formulas, for getting long term sugar in milk and low fat formulas (nowadays we mix 3 different formulas).

The Klinik supported us with all the things for the pomp, all discharge stuff for the machine, for half a year duration. Of course everything is not so stable with glucose indicators after operation and we still have glucose drops down even to 2-3, but we were taught how to manage, not to be afraid, which steps should be done in this case, we are trying to live as a normal family, hopefully we are at home now, our aim nowadays is to regulate the dose by playing with pomp on basals and boluses of the drug and getting off the gastric tube!

We are really happy for the families who got 1-2 focuses that could be removed, in our case it's impossible. We would just hope that disease will behave better when Anastasia become older, time will show... Anyway, we can remove all pancreas oneday, if we decide, but i hope that it's not needed.  #

We would like to thank all team of doctors worked with us there and all nurses, they were so responsive. We left Greifswald on 10th of December, but I'm sure that Anastasia's subconscious memory will reproduse once when she will get older: «Du bist so nett, so suss....Ja» (as all nurses and doctors were telling her) and she will ask me: «Have I ever been to Germany?», then I will tell her this long story or will show this page...  

First Birthday of Anastasia from Moscow already two pancreatic surgeries, but now everything is good!

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