Andrei Fagurel - English

I learnt how to clap my hands and I’m having a lot of fun !

Otherwise, I lick every day a little food and try different tastes. A friend, the mother of a baby who also has esophageal atresia like me, told mommy she should continue with this, no matter how hard it seems in the beginning. It seems this is the only way for me to learn how to eat.

I don’t always want to bite, but yesterday, for instance, I fought with a slice of salami. I like it, I have to admit.

And I started liking to brush my teeth with a “real” toothbrush, that type for small children, not for babies. Well, I am a little older already, don’t you agree?

I listen to music for children all day long, I play and have fun. Occasionally, I make fun of mommy and daddy, especially when I see them very tired, and I don’t want to go to bed until 11 and a half in the night. Hi hi hi!

Rrrrrr! I watched mommy and daddy to see what they do when they eat. And I learnt something: you have to bite some pieces!

The problem is I still don’t know what to do after I bite, so I start making funny faces and trying to get the piece out of my mouth. Today, for instance, I ate mashed potatoes and steak. I can manage pretty well the mashed potatoes, but when I bit the piece of steak she gave me, she totally panicked. Don’t worry, we managed to solve the situation, the pieces were skillfully extracted in short time.

Bufli (The-Cheeky-One) got a new, smaller, lighter buggy, today, so thathe can go only with mommy to the hospital or Kinderzentrum appointments and so on.

It’s about time we don’t put daddy so much on the road between work and… playing the driver for us to take us to the lots of appointments we have. Because, I don’t know if I’ve told you before, Andrei is a very busy baby, he does a lot of physiotherapy, logopedy, check-ups… So, a little independence is needed, now that we got a little more used to how things work.

For some time, almost a month now, momy and daddy always give me to taste a little of what they eat. I think they noticed I am curious, when we were sitting together at the table in the kitchen and I saw them eating.

In the begining, I only tasted a little and it seemed really bad… But now, I actually started to like it :). For instance, today I ate together with mommy, “tortellini” with white cheese and sour cream sauce. Actually, I ate the sauce and mommy ate the pasta. I thought it was veeery good, I ate a lot and, when I was seeing that mommy doesn’t give also some to me, I would stretch towards her. And she understood and gave me a little with my spoon.

Today, I actually took the spoon to my mouth myself, which made mommy veery happy. Big deal!…

I also like, in order of prefference, chocolate and cream cookies, chocolate, lasagna, chicken soup, apple and bannana… And the list is always growing. And I am trying to take more and more, I actually started liking it. Because of my eating prefferences, mommy is making fun of me and calls me Garfield…

I proudly report 14 kilos and 82 cm! I am definitely growing!

And I also report 4 new teeth in progress! 2 on the upper side and 2 on the lower side, they have just appeared. I am a little shark ;).

THE PROBLEM:

Andrei was born in Bucharest on the 2nd of March 2006 with esophageal atresia (a missing part of the esophagus) and tracheo-esophageal fistula (the esophagus communicated with the trachea trough a little hole). He was born at 39 weeks, weighing 2.6 kilos and with an APGAR score of 9. During the pregnancy, I went monthly to check-ups and had ultrasounds,I also had 2 morphological ultrasounds, 3d and 4d. Everything seemed ok at that time.

Andrei was transferred to Grigore Alexandrescu Emergency Hospital in Bucharest and operated, after 9 hours from birth.

Totally, he was operated for 4 times during the first 11 days of his life: for 3 times, an anastomosis was tried (suturing the esophageal ends together), which were unsuccessful; in the last operation, he got a cervical esophagostomy (the upper part of the esophagus was raised at the neck and sutured at the skin, making a little hole for the saliva to come out) and a distal esophagostomy (the lower part of the esophagus, the one that is attached to the stomach, was brought at the skin and a tube was placed through it for feeding). The normal procedure would have been making a standard gastrostomy, meaning a hole directly into the stomach. We would later find out that Andrei’s lower esophagus had been completely cut out and that, through that distal esophagostomy, his stomach had been twisted…

The surgeon just lied to us when my husband asked him if he cut some of the esophagus, saying he didn’t. The reality is that Andrei now has only 2 cm left of the upper esophagus, which is not even enough for the esophagus to reach the chest, and no lower esophagus.

After each of the first 3 operations, major complications appeared: mediastinitis (infection of the mediastinum, the membrane that separates the organs from the thorax) and pneumothoraxes (accumulation of liquid in the thorax), because the esophageal suture came apart. The mediastinitis is extremely dangerous because it can mean a generalized infection of all the organs from the thorax (the hart, the lungs), and the pneumothoraxes represent potential infection sources in the thorax, compression of the lungs and moving organs from the thorax and the liver out of the normal place.

It was only after 4 operations that we were told that there had been previously no other baby to withstand 4 operations of this kind…

The post-operatory evolution was very bad. Andrei could not be extubated (wheaned from the mechanical ventilation machine), he was diagnosed with severe pneumonia and cardiac insufficiency. For a month and 18 days, we were continuously told that it’s not possible to tell if he would survive from one moment to another. He had, during this time, lots of episodes with desaturation (dropping of the oxygenation level in the blood) and bradycardy (dropping of heart rate) and 6 cardiac arrests and reanimation episodes. During the first 2 weeks before transferring him to Germany (20th of April 2006), Andrei continually received cardiac stimulents.

THE TRANSFER:

Before we decided to transfer Andrei to Germany, we have spoken to a lot of doctors in order to understand if they think it is possible to do more for Andrei and if he would withstand being transported by plane (being artificially ventilated, having pneumonia and supposed to have cardiac problems). All of them told us traporting is not possible and that we are in the best possible place for his treatment.

Because his condition was continuously worsening, the doctors announced us that Andrei will not survive. That was the moment when we decided to take all the risks and to transfer him to Bremen, Germany. We contacted the doctors in Bremen by sending an email to an address that was posted on the clinic’s website. We received an answer from Dr Heidrun Gitter, pediatric surgeon.

On 20h of April 2006, Andrei was transferred to Bremen with a special medical plane, on a dedicated flight, by German Air Rescue (DRF). The DRF team was comprised of doctor, paramedic and pilot. The doctor and paramedic came to Grigore Alexandrescu Hospital with all the necessary equipment (e.g. special transport incubator) and prepared the patient for transport, they took Andrei and transported him to his bed in Bremen Hospital. Starting from the moment when Andrei entered their hands, the cardiac stimulents were interrupted and we were told he would be ok.

The flight was uneventfull, we got to Bremen at night, around 22:00 hours. We were expected in Intensive Care Unit by the entire medical team, including the best and most experienced doctors and the surgeon we had talked to, who, obviously, all came from home especially for Andrei. I got a room in the hospital and I could come and stay with him whenever I wanted and for as long as I wanted (in Romania I could only stay with him for maximum 15 min per day between 3 PM and 4 PM, if the hospital was not in quarantine, when I could not enter at all).

During the following 2-3 days, Andrei was strongly sedated, received morfine as a painkiller and was stabilized (on arrival, doctors told me he was in shock and exhausted). Then, after a few days, they were able to extubate him and I could hold him for the first time.

THE TREATMENT IN BREMEN:

In Bremen, the surgeons tried to save Andrei’s esophagus, which would have given him the chance to lead a perfectly normal life. The esophagus has the incredible possibility to grow, if a certain tension is applied to the esophageal pouches. Dr John Foker from USA, the inventor of an esophageal elongation techinque ( Dr John Foker’s website) came to Bremen especially to operate on Andrei.

Andrei got 2 more operations:
1. The first one was done in order to help the right lung decompress (the diaphragm muscle, which was not functioning anymore), was fixed at a lower position, in order to leave more space for the lung, the lower pouch of the esophagus was closed and a standard gastrostomy (a little hole in the stomach for feeding) was done, the stomach was placed back in its natural position.
2. The second operation was an attempt to apply the esophageal elongation procedure by Dr Foker. We found out with this ocasion that the lower pouch of the esophagus had been completely cut out in Romania. Because of this, Dr Foker’s method could not be applied anymore.

In Romania, one of Andrei’s nerves which commands the movement of the diaphragm muscle was completely distroyed. The diaphragm muscle has an exclusive role in babies’ breathing, so Andrei’s right lung is not functioning properly at the moment. Because of the respiratory problems and because he was so weakened, Andrei’s condition was oscilating. Andrei was in Bremen for 9 months, of which approximately 7 were on the Intensive Care Unit and approximately 5 months in total he was mechanically ventilated. The longest continuous period of mechanical ventilation was of 1 month and a half.

FINANCIALS:

We paid entirely the cost of medical transport with dedicated plane (there was no other possibility considering Andrei’s condition at that moment) at the time of transport by us, using all the savings we had.

We covered also an advance of the estimated costs of the treatment, with money we had borrowed from the company where my husband and I were employed at the moment.

We continued to cover certain amounts of money as the treatment proceeded, either from money we had borrowed from our employer or from the money we managed to gather in the meantime.

Due to the extraordinarily long hospitalization time, most of it implying mechanical ventilation and intensive care, which are extremely expensive (approx 1500 EUR per day), the final costs went over 220 000 EUR, and this is with regard to the fact that neither the German surgeons nor Dr Foker requested compensation for performing the surgeries. The entire amount contained only hospitalization costs and the treatment received. Having the doctors support and the understanding of the hospital administration, the financial department decided to practically ignore and cut out of the invoice the costs of some treatment months when Andrei was not as intensive to take care of. The costs of my staying there were also eliminated (it’s worth mentioning I stayed for 9 months in the hospital and received everything that was necessary, including 3 meals per day). So, the final invoice cumulated to a rest of 161.775 EUR

Because we realized we can no longer sustain the treatment financially and realizing that Andrei has problems that would not be possible to solve in Romania, my husband found a job in Germany and we all moved to Munich. Starting from November 1, 2006, we were covered by German Health Insurance and the treatment costs as “private patients” stopped at 161.775 EUR.

HOW DID WE MANAGE PAY UNTIL NOW:

Our families and friends helped us a lot. Each of them donated as much as they could.
Our families managed to obtain some sponsorships from companies.
The rest were all gathered through humanitarian campaigns, from private persons.
The doctors in Bremen launched a humanitarian campaign in the local newspaper for Andrei. We also received help from the nursing staff in Bremen, they also launched humanitarian campaigns.
We also received help from Children’s Care Humanitarian organization and the people of Bad Lautenberg, in Germany.

THE TRANSFER TO MUNICH AND AFTERWARDS HOME:

On the 13th of December 2006, Andrei was transferred to Munich, on the Intensive Care Unit of the von Haunersches Children’s Hospital. He was stationed there for another 2 months, out of which he was artificially ventilated for a moths because of a severe viral infection of the lungs.

Starting from 2nd of February, Andrei was finally home, after 11 months of hospitalization, out of which 9 alone were on Intensive Care Units. Since that day, he has been at home, except for one week when he had a sever viral infection again and necessitated hospitalization. Happily, the infection resolved under appropriate medication, so he did not need mechanical ventilation again.

Now, Andrei is developing and trying to recover the developmental delay generated by the prolonged hospitalization. He has learnt to roll, to sit, to give kisses, he is learning to speak and, very slowly, gets used to receiving a little food by mouth.

WHAT’S NEXT IN ANDREI’S TREATMENT:

Andrei will have to go through an operation for constructing his esophagus. There are more options for this (jejunal interposition - a part of the small bowel is brought to replace the esophagus, gastric pullup - the stomach is raised in the thorax or colonic interposition), each of them having advantages and disadvantages.

We will make a decision as to what the operation will actually be and we hope it will be possible to make it at the begining of next year.

If you want to help us cover the costs for Andrei’s treatment, please find the possibilities for making a donation in page How can I help of this website.

You can contact us anytime. Please find the contact details in page Contact of this website.

We are grateful in advance for your support and your warm thoughts!

Look, we are bragging again. For about 2 days now, Andrei started trying to say “ma-ma” (”mommy”, in Romanian)!

He still doesn’t get it very correctly, but the intention is very clear, he is trying to imitate the sounds we are making. Sometimes, it’s “ma-ma”, sometimes “ua-ua”, but you agree it’s a good thing that he’s trying, right?

And now, that he got the “kissing skills”, he is practicing hard, so me and Dragos are being kissed all the time.

Andrei kisses you all.