The children with esophageal atresia have long way to walk. Only the people they had this experience can understand. For all of you, feeding and swallowing is a nature function, for me was the miracle I was waiting for 2 years.
I want to thank aunt Julie, who spent more than 1 year with a suitcase on her hand. Her help and her support was valuable,
to uncle Strato, who helped us to leave in time,
to all the people sent me mail with wishes,
to our insurance company and especially to Mrs.Patra, because they covered the cost of my treatment,
a big thank to my dearest Pr.John Foker. Because of him I managed to reach my dream,
to Dr.Oliver Muensterer, who never stopped to support my family,
to my dear volunteer, Michael, from Ronald Mc Donald House in Leipzig,
to Ronald Mc Donald House in Leipzig and Utrecht,
to the paediatrician team from Leipzig,
to the Universitair Medical Centrum for the acceptance and the care they gave me,
to the priest Georgio Perri and to my friend Maria who supported my mother,
to my best friends, Amaya, Teo and Ionuts and of course,
a big thank to my 2 surgeons Pr.Van der Zee and K.Bax for the Miracle they gave me. God bless them.
Friday, June 19, 2009
4 months after the repair...
It is the first time after his birth that Nickolas can make plans for his future.
Its not long time we removed the mic-key button and closed the gastrostomy.
It is the happiest period of his life, together with his family and his 2 sisters.
He has good amount of food by mouth. He eats everything with no signs of reflux.
Its not long time we removed the mic-key button and closed the gastrostomy.
It is the happiest period of his life, together with his family and his 2 sisters.
He has good amount of food by mouth. He eats everything with no signs of reflux.
Operations...
11/12/07 Internal tractions, lower esophagus, thorakotomy (Foker).
31/01/2007 Internal tractions, lower esophagus, thorakotomy.
18/02/08 Elongation cervical fistula, Kimura, failed. 22/02/08 Moved back.
05/03/08 Endoscopy. Elongation cervical fistula (Foker).
12/03/08 External tractions, lower eshophagus, thorakotomy.
21/03/2008 They informed us that he is ready for anastomosis. They closed the external tractions.
04/04/2008 Contrast test.09/04/2008 Endoscopy, lost tractions from the esophagus(?). 11/04/2008 Operation to find tractions from the back side where the button was.
17/04/2008 The upper part of the right lung ready to colapse.
20/04/2008 Infection, thorakotomy to clean infection.
26/04/2008 Severe mediastinitis and sepsis.
29/04/2008 First signs of recovery.
21/05/08 Elongation cervical fistula, Kimura.
03/06/08 Elongation cervical fistula, Kimura, another failure.
09/06/08 Moved back to the first esophagostomy.Back home to recover.
09/10/08 Internal tractions, lower esophagus, thorakotomy.
29/10/08 Internal tractions, lower esophagus, thorakotomy.
18/11/08 Internal tractions, lower esophagus, thorakotomy. Closure of spit fistula and advancement as a pouch. Double operation.
25/11/08 Perforation of the upper part because of the drainage tube. Back to spit fistula.
20/01/2009 Anastomosis with jejunum.
31/01/2007 Internal tractions, lower esophagus, thorakotomy.
18/02/08 Elongation cervical fistula, Kimura, failed. 22/02/08 Moved back.
05/03/08 Endoscopy. Elongation cervical fistula (Foker).
12/03/08 External tractions, lower eshophagus, thorakotomy.
21/03/2008 They informed us that he is ready for anastomosis. They closed the external tractions.
04/04/2008 Contrast test.09/04/2008 Endoscopy, lost tractions from the esophagus(?). 11/04/2008 Operation to find tractions from the back side where the button was.
17/04/2008 The upper part of the right lung ready to colapse.
20/04/2008 Infection, thorakotomy to clean infection.
26/04/2008 Severe mediastinitis and sepsis.
29/04/2008 First signs of recovery.
21/05/08 Elongation cervical fistula, Kimura.
03/06/08 Elongation cervical fistula, Kimura, another failure.
09/06/08 Moved back to the first esophagostomy.Back home to recover.
09/10/08 Internal tractions, lower esophagus, thorakotomy.
29/10/08 Internal tractions, lower esophagus, thorakotomy.
18/11/08 Internal tractions, lower esophagus, thorakotomy. Closure of spit fistula and advancement as a pouch. Double operation.
25/11/08 Perforation of the upper part because of the drainage tube. Back to spit fistula.
20/01/2009 Anastomosis with jejunum.
The end of the story...
We arrived to Utrecht on 14 of January 2009.
Nickolas had his last operation on 20/01/2009.
Pr.Van der Zee informed us about the plan. If the gap wasn't more than 3cm, he could try to make anastomosis, if no, then, jejunum was the alternative choice.
Unfortunately the bad condition of the esophagus didnt allow them to continue with the anastomosis despite the good lenght. Nickolas esophagus grown but it was completely damaged, lumenless and full of scar tissue.
Pr.Van and Pr.Bax managed to save only 2cm from the lower part. Exactly like we started on 02/12/07.
A piece from jejunum took the place of the missing esophagus. The duration of the operation was 12 hours.
Nickolas recovered well without complications and on 27 of February we returned home.
Nickolas had his last operation on 20/01/2009.
Pr.Van der Zee informed us about the plan. If the gap wasn't more than 3cm, he could try to make anastomosis, if no, then, jejunum was the alternative choice.
Unfortunately the bad condition of the esophagus didnt allow them to continue with the anastomosis despite the good lenght. Nickolas esophagus grown but it was completely damaged, lumenless and full of scar tissue.
Pr.Van and Pr.Bax managed to save only 2cm from the lower part. Exactly like we started on 02/12/07.
A piece from jejunum took the place of the missing esophagus. The duration of the operation was 12 hours.
Nickolas recovered well without complications and on 27 of February we returned home.
At Leipzig...
We arrived to Leipzig on 2 of December 2007. Pr.Foker also was there.
The diagnosis wasnt surprise, but the plan was big surprise for us!
Long gap aprox.6cm without fistula. The plan included 3 operations (2 times internal tractions, 1 time external tractions, elongation of the upper part and then anastomosis), Nissen and dilatations. Maximum 6 months, included complications and the fact that he could not be there all the time.
Pr.Foker did the first operation as he promised and left. Because of his age and the several health problems he had to face, I saw him 3 more times.
On April of 2008, Nickolas had a severe complication. Heart failure and mediastinits. The situation was very bad and his life was at serious danger. That difficult moments, Pr.Foker and and Dr.Siekmeyer managed to save his life. Despite the fact that Pr.Foker was thousands miles away, he did the miracle. God and doctors helped Nickolas to recover.
We stayed there over 1 year, counting operation without success. End of December of 2008 they decided to stop the procedure. We returned home and on January we flew to Netherlands.
The diagnosis wasnt surprise, but the plan was big surprise for us!
Long gap aprox.6cm without fistula. The plan included 3 operations (2 times internal tractions, 1 time external tractions, elongation of the upper part and then anastomosis), Nissen and dilatations. Maximum 6 months, included complications and the fact that he could not be there all the time.
Pr.Foker did the first operation as he promised and left. Because of his age and the several health problems he had to face, I saw him 3 more times.
On April of 2008, Nickolas had a severe complication. Heart failure and mediastinits. The situation was very bad and his life was at serious danger. That difficult moments, Pr.Foker and and Dr.Siekmeyer managed to save his life. Despite the fact that Pr.Foker was thousands miles away, he did the miracle. God and doctors helped Nickolas to recover.
We stayed there over 1 year, counting operation without success. End of December of 2008 they decided to stop the procedure. We returned home and on January we flew to Netherlands.
Pr.John Foker...
We sent a mail to the University of Minessota where Pr.John Foker works and the reply came from him.
It was amazing. We could not believe it. He was writing that he could understand how difficult was for us to reach to Usa and he suggested us to take the baby to the University of Leipzig in Germany.
After his reply, we mailed to families from Usa, families with atresia children, that Dr.Foker operated on the past. We wanted to be sure for our decision. Everybody was talking for a unique surgeon with huge experience, a special and kind person who offers and continues to offer treatment to many sick children.
We took the decision to go.
The appointment was for 2 of December 2008 and we had many things to do first, so as to be there in time.
It was a very complicated situation, a lot of paper work to be done, but finally our insurance company covered us.
It was amazing. We could not believe it. He was writing that he could understand how difficult was for us to reach to Usa and he suggested us to take the baby to the University of Leipzig in Germany.
After his reply, we mailed to families from Usa, families with atresia children, that Dr.Foker operated on the past. We wanted to be sure for our decision. Everybody was talking for a unique surgeon with huge experience, a special and kind person who offers and continues to offer treatment to many sick children.
We took the decision to go.
The appointment was for 2 of December 2008 and we had many things to do first, so as to be there in time.
It was a very complicated situation, a lot of paper work to be done, but finally our insurance company covered us.
At home...
The next months, Nickolas grow and become a happy and healthy baby.
In Greece, there are not many surgeons with experience in esophageal atresia and the options we had, was colon interposition or gastic tube.
We made a search via internet and we saw that abroad we had more options. Fokers procedure and the true primary repair even for wide gaps, seemed ideal to our eyes. And all the surgeons despite the method they do, agree to one thing: if you can make anastomosis by using the nature esophagus, this is perfect!
We decided that we should do a try. Nickolas deserved the best we could do.
And who should be the best surgeon for such a difficult method?? Of course the father of this procedure. Pr.John Foker.
In Greece, there are not many surgeons with experience in esophageal atresia and the options we had, was colon interposition or gastic tube.
We made a search via internet and we saw that abroad we had more options. Fokers procedure and the true primary repair even for wide gaps, seemed ideal to our eyes. And all the surgeons despite the method they do, agree to one thing: if you can make anastomosis by using the nature esophagus, this is perfect!
We decided that we should do a try. Nickolas deserved the best we could do.
And who should be the best surgeon for such a difficult method?? Of course the father of this procedure. Pr.John Foker.
After birth...
Nickolas was delivered after a gestation of 39 weeks, on 31/01/07, at the private hospital "Mitera" in Athens. He was borned with a rare congenital disorder which called esophageal atresia.
Esophageal atresia is characterized by incomplete formation of the esophagus.
Nickolas, had 2 blind pouches, undeveloped distal esophageal remnant about 2cm, without fistula, wide gap aprox.6cm and the repair was just impossible to happen after his birth.
Immediately, a replogle tube placed in the food pipe to remove saliva.
The second day of his life, the surgeon performed a gastrostomy in the stomach, so milk can be given directly into his stomach.
He stayed at the hospital for 3,5 months waiting his esophagus to grow, under the care of his surgeon Dr.Fokaea Tr. Unfortunately, nothing happened.
Then, the surgeon brought the food pipe out into an opening at the site of his neck (esophagostomy) and with this way, allowed the saliva to drain out.
It was time for the small Nicko to return home waiting the time of his repair.
Esophageal atresia is characterized by incomplete formation of the esophagus.
Nickolas, had 2 blind pouches, undeveloped distal esophageal remnant about 2cm, without fistula, wide gap aprox.6cm and the repair was just impossible to happen after his birth.
Immediately, a replogle tube placed in the food pipe to remove saliva.
The second day of his life, the surgeon performed a gastrostomy in the stomach, so milk can be given directly into his stomach.
He stayed at the hospital for 3,5 months waiting his esophagus to grow, under the care of his surgeon Dr.Fokaea Tr. Unfortunately, nothing happened.
Then, the surgeon brought the food pipe out into an opening at the site of his neck (esophagostomy) and with this way, allowed the saliva to drain out.
It was time for the small Nicko to return home waiting the time of his repair.
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