Povestea mea/My story

Letter for the soul/ English version

The first time you see these big and gentle eyes you feel like they will follow you and remain in your soul for the rest of your life. These are the eyes of a little angel of six months who wishes to have a chance to make his first steps, to say his first words and to make the world a better place.

Named after Saint Siluan, which means “gentle and humble hearted”, he is a wonderful baby currently going through great trials. His birth on 8th of February 2010 in Brasov, was a great joy for the father George and presbytera Simona Bota. They are a very nice family who helped many people over time and they were blessed by God with three wonderful little children. Ever since he was in the womb, his mother used to call him “Micu”- The little one, and so it remained his nickname. Now “Micu” needs our help.

Here is his story:

Siluan was born on 8th of February 2010 (8 lb 4 oz and 20.5 in). He seemed perfectly healthy, everything went normally, and nothing and nobody could have predicted what will happen. It was an easy birth and without any complications, presbytera Simona says.

After only one week since birth he started going to the hospital, where he was seen by an orthopedic surgeon who decided that the legs must be put in gypsum for a week to correct the feet position. Presbytera Simona described us the first hours after the intervention: “He cried until he drained his tears… then at home, he was in so much pain because we had to keep the feet up so the toes wouldn’t swell and turn blue. All night long I held him in my arms while he was crying… he even refused to breastfeed…” And miraculously, as if he understood that this was good for him, the next day he was happy and lively again, and began to raise his head and watch everybody around him.

At 10 days old his mother noticed one thing: the color of Siluan’s skin was still too “yellow” in her opinion. Having experience with physiological jaundice with the first two children which disappeared  in a few days, she was worried that something was happening with the baby.

During the next period of time the brothers were enjoying each other and the mommy was happy seeing all three of them playing together nicely. Siluan was growing day by day and the family was grateful to God for this wonderful baby.

After a couple of days the doctor took off the gypsum. One leg was recovered, the other one not so much and they had to continue with massage. After two more weeks they had to go back to the doctor’s office for a consultation.

At the end of March he got sick with bronchiolitis and fever, and was treated with Augmentin and suppositories. He manages to somewhat recover, but jaundice was still persisting and this was a big concern for his mother. He gets a treatment of Liv52 – 2 ml two times per day taken with the antibiotic for the bronchiolitis.

On April 12 he was seen by the family doctor and receives a prescription with Phenobarbital 15 mg for a week, and at the end of treatment he had to do a follow-up. He begins to throw up often, especially when he took the medicines and apparently the situation becomes more difficult to control. After almost a week they went back to the doctor’s office, and because the bronchiolitis persists he gets a new treatment with Stodal and saline. The doctor insists that they need to continue with Phenobarbital because of the jaundice.

When he was 10 weeks old, on Tuesday, April 20, 2010, due to the fact that the jaundice was not yet healed, his mother and him are hospitalized for four days at the Children’s Hospital in Brasov, where he was prescribed treatment with Ampicillin, Aspatofort, Isoprinosine and Ursofalk. The ultrasound showed that the cholecystitis was small and they were told that only after a CT or MRI they would know for sure if Siluan needed surgery. At that time the doctors suspected that a virus, contacted by his mother during pregnancy, affected the development of Siluan and led to all the problems faced by “Micu”, who now measured 57 cm (22.4 in) and weighed 5800 g (12.79 lb). Presbytera Simona was saying “all I can do is pray and hope… I’m incoherent, very tired, EXHAUSTED! My baby is exhausted! He is very sensitive, he suffered so much… my sweet baby was loved by every nurse and they nicknamed him CURLY! I’m not able to tell you all that we’ve been through… I don’t want to remember… I can’t stand seeing him suffer anymore!”

On Monday, April 26, they go back to the hospital and the doctor who took care of the case, encouraged them by telling them that the situation seems to be turning for the better. In his words: “he’s not so “yellow” anymore, so this is really good…” The same day at the ultrasound, the doctor, which presbytera Simona considered to be great, assured them that Siluan is perfectly healthy and everything looks normal. “Of course the cholecystitis is small, because the baby is small too” – the doctor said. She eliminated the necessity to perform an MRI or a CT scan, saying there is no use doing it. After that they had to wait until next week to get the results for the bilirubin analysis that would confirm the virus which led to all these problems.

He was seen by another pediatrician, who advised the mother to take him immediately to a clinic in Targu Mures, but at the suggestions of the doctors they wanted to see the results of the investigations and encouraged by the ultrasound doctor they decided to wait another week.

After another three days, at the follow-up the doctor was amazed by the little baby, how good he looked and his skin color. However the results of the analysis took too long… too long to come. Next week they were hospitalized again for a new set of tests. Presbytera Simona was concerned about this, knowing how traumatized was Siluan by the last hospital experience of four days.

On May 7 they go back to the hospital for blood and urine tests and a new ultrasound. Doctors seemed disappointed, the cholecystitis was still very small, and they told the parents that the situation is not so good and they should go to another clinic where could find the help needed. And still those first test results never came…

After a few days, on May 10, they had a diagnosis: NEONATAL HEPATITIS WITH CYTOMEGALOVIRUS!

Presbytera Simona said: “it is quite complicated since it must be treated as soon as possible so that we don’t reach a critical stage when the only chance to survive is liver transplant! We’re already desperately looking for the medication vials that have to be done intravenously for 21 days… and they’re expensive, but for our child we’ll do anything! On top of that he has a pretty big anemia, and the bilirubin levels are higher than two weeks ago!”

On May 12, they start treatment with antibiotics, but Siluan makes a hernia crisis and they end up in the hospital again, where they get a temporary treatment beside the antibiotic. They are allowed to go back home but with a catheter on his little hand. The baby seems happy to be home again, but his mother is going through a difficult period of time because she has two more children who need her.

Presbytera Simona tells us about the hospital experience: “he was screaming… but finally they managed to push the hernia back in (he was screaming and crying so loud), and we had to stay overnight for observation… he moaned for an hour. In the morning we left to the other hospital where we started the antibiotic treatment… I pray to God to give me strength because I feel like I’m overwhelmed by all this!!”

On May 14, they receive a call from the hospital letting them know that the test results are good and they can continue with the antibiotic. But this wasn’t true, since that night they end up again in the hospital, and the doctors were very skeptical about the baby’s health. Siluan undergoes surgery to correct the hernia. And this time they receive a new diagnosis: BILIARY HYPOPLASIA.

Presbytera Simona describes it all: “The surgery went well, even though the anesthetists told us he may die on the table or within 24 hours… he had a risk four! And this because of his bad test results, but the good Lord helped us! I can’t even say what I’ve been through during the two hours surgery and then all night… I don’t know how I’m still in one piece. I’m really exhausted and I don’t feel like saying anything else…”

On May 19, they arrive home with the catheter on his hand, instructions to continue with the antibiotic and… hope. Meanwhile they prepare for a new stage, which seemed inevitable… Fundeni, Bucharest.

The last tests showed a small decrease of the bilirubin level, and in the following week they finished the treatment, because the doctors decided to do it only for 14 days instead of 21, and if needed they’ll do some more after one week break. Next Tuesday they were supposed to redo some blood tests. Simona was saying: “I’m really scared… The nurses and the doctors told us that he is not so yellow anymore, but I didn’t think that or better said I was afraid to hope it was true.”

The next step, the clinic in Fundeni, Bucharest, was postponed at the advice of a physician from the same clinic. Dr. Constantinescu advises them to wait until they arrive in Bucharest. Yet on May 27 they were headed to Bucharest, but this time to Gomoiu Hospital, where Siluan was supposed to do a liver puncture, but instead they return home with hope and the baby has to do a treatment with Predinson for two weeks. During the next period of time “Micu” follows his treatment and is subject to new investigations and the results oscillate between good and bad. The situation seemed to be under control and everybody hoped everything will be fine… finally.

On June 18, the bilirubin and CMV tests are repeated at the Bioclinic. Bilirubin came out with two units less than the result at Children’s Hospital in Brasov. They make the final decision to head to Fundeni. Unfortunately the road to get there was not so easy and they’re asked to send the data there and just wait for a response.

Meanwhile, the situation doesn’t look so good, new problems emerge, and the baby is hospitalized again in Brasov because of his enlarged liver, swollen belly and his loud crying. Lately, he didn’t gain any weight and that was another sign of great concern for the doctors and the parents. And unfortunately from Bucharest they’re still not getting any answer.

On July 18, exactly one month after they made their first steps towards the Fundeni clinic, they finally arrive there. They do a new set of tests, but the MRI is postponed again. The doctors were speaking more and more about a liver transplant, while the parents were terrified of this thought. And yet nobody seemed to rush things, telling them that only in September they will be able to do something…

Disappointed and with their last resources, presbytera Simona and father George decide to go abroad and put their trust and hopes in the hands of our Lord Jesus Christ and accepted that the foreign doctors  might be able to save their precious baby of 6 months, who looked at them with his beautiful big eyes asking for help.

On July 26 they arrive in Munchen. The next day Siluan is admitted in Salzburg, Austria, where the biopsy is done immediately and everything takes place at a speed that amazes the parents and made them think about how much time they lost…

From day one the doctors established the result: a LIVER TRANSPLANT was Siluan’s only chance to survive. They found a new diagnosis biliary atresia and confirmed the diagnosis of liver cirrhosis caused by an infection with CMV.

It’s hard to imagine what the parents are going through. Presbytera Simona is tired out, tired of so many months of fighting. The only thing that keeps her going is hope, faith in God and endless love for her baby. Father George is commuting daily from Munchen to Salzburg. They are tired to exhaustion but they still have hope… hope that their baby will live.

Hannover will be the next destination, where they will perform the transplant. Until then they run compatibility tests and try to rush the intervention. The situation is very delicate because Siluan developed some complications after the biopsy. After all the medication he took for so many months, after all the tests and examinations, it’s no wonder that his little body is tired. Yet the doctors are optimistic and they do everything in their power to save the baby.

Where did they go wrong? Who was wrong? And how… ? These are questions that have no sense right now, that’s not what the baby needs. We have only one question that we can try and find an answer: What can I do to help him? You read his story above and I thank you for this. I wrote enough or not.. I don’t know, but I tried to relate everything that happened during the last months. It would be good if presbytera Simona could tell you the story, but unfortunately she’s not able to do that right now.

Presbytera Simona and father George are two wonderful people, a God-fearing family, humble and with great hearts. They helped a lot of people and never asked for help or anything else from anybody. They hoped that the Romanian doctors could help their baby and they went ahead following their cause, in which they strongly believe.

This is the story of a six months baby who needs our help. An estimated total cost of the liver transplant surgery will reach almost 126.000 euros. It is a lot, we know, but from bit by bit we can do it.

Now Siluan needs money to be accepted for the surgery so he can live. Yes it is sad, but this is the reality and every penny can buy 5 minutes of life for this precious little baby.

We will keep you posted with news, pictures and hopefully in a few months we will see Siluan saying THANK YOU to all of us! In Brasov the winters are so beautiful and those big beautiful eyes want to see the first snow…

Please help us with your prayers!

Scrisoare către suflet/ Varianta in limba romana

De cum ii privesti pentru prima data, acesti doi ochisori mari si blanzi te urmaresc mereu si iti scriu in suflet mesaje pe care le vei purta cu tine toata viata. Sunt ochisorii unui sufletel de nici 6 luni care doreste sa faca primii pasi, sa spuna primul sau cuvant, sa traiasca si sa faca lumea asta mai frumoasa.

Poarta numele Sfantului Siluan, care inseamna “bland si smerit cu inima”, este un copilas minunat care trece momentan prin mari incercari. A fost asteptat cu mare bucurie de catre familia preotului George si Simona Bota. Este o familie frumoasa care a ajutat multa lume de-a lungul timpului si care a fost binecuvantata de bunul Dumnezeu cu 3 copilasi minunati. De cand era inca in burtica, mami obisnuia sa-l numeasca “Micu” si asa l-am alintat si noi. Acum “Micu” are nevoie ajutorul nostru, al tuturor.

Iata povestea lui:

Siluan a venit pe lume pe 8 Februarie 2010, a avut la nastere 3820 g si 52 cm, parea perfect sanatos, totul a decurs normal, si nimeni si nimic nu putea sa prevada ce va urma.

Drumurile lui prin spitale au inceput la numai o saptamana de la nastere cand a fost evaluat de un chirurg ortoped si s-a decis ca trebuie sa i se puna piciorusele in gips pentru o saptamana, pentru a-i corecta pozitia talpilor.

La 10 zile de la nastere mama sa a observat un lucru: culoarea pielii lui Siluan era totusi prea “galbena” in opinia ei. Avand experienta icterului fiziologic cu primii doi copii la care a trecut in cateva zile, era totusi ingrijorata de ceea ce i se intampla micutului.

A urmat o perioadă în care frăţiorii se bucurau unul de celalat şi mama era fericită. Siluan creştea pe zi ce trece şi familia se bucura în fiecare zi de noul puiuţ care le-a fost dăruit de Dumnezeu.

Pe la sfarsitul lui  Martie a dezvoltat  insa o bronsiolita cu febra, care a fost tratata cu Augumentin si supozitoare. Reuseste sa se refaca cat de cat  dar icterul inca persista si asta o ingrijoreaza cel mai mult pe mamica lui. Primeste tratament  2 ml de Liv 52 de 2 ori pe zi care aeste administrat impreuna cu antibioticul pentru bronsiolita.

In Aprilie a fost vazut de medicul de familie si a primit  tratament cu Fenobarbital 15 mg pentru o saptamana dupa care urma sa se evalueze starea copilului la sfarsitul tratamentului.  Insa a inceput sa aiba varsaturi tot mai des, mai ales cand i se administrau medicamentele si situatia parea din ce in ce mai greu de controlat. Peste aproape o saptamana au mers din nou la medic datorita faptului ca  bronsiolita inca persista. Tot el a insistat ca trebuie continuat cu Fenobarbitalul in continuare in cazul icterului.

La 10 saptamani, Marti, 20 Aprilie 2010, ca urmare a faptului ca icterul inca nu era vindecat,  el si mama lui sunt internati pentru 4 zile la Spitalul de Copii din Brasov unde i s-a  prescris un tratament cu Ampicilina, Aspatofort, Isoprinosine  si Ursofalk. La ecografie  s-a vazut ca are colicistul mic si li s-a spus ca numai  dupa un CT sau RMN se putea sti daca e cazul sa fie operat sau nu. La acel moment doctorii banuiau ca un virus contactat de catre mamica lui in timpul sarcinii a afectat dezvoltarea lui Siluan si a dus la toate problemele de sanatate cu care se confrunta  “Micu”,  care acum masura 57 cm si cantarea 5800 g. Simona povestea  atunci: “nu imi ramane decat sa sper si sa ne rugam…sunt tare incoerenta,obosita, SFARSITA! Baiatul este terminat! Este foarte sensibil A suferit enorm…dragutul era iubit de toate asistentele care ii ziceau CRETU’! Nu ma mai simt in stare sa va mai zic prin ce am trecut…nu mai vreau sa imi aduc aminte…nu ma mai simt in stare sa il vad suferind!”

Luni 26 Aprilie merg din nou la spital si doctorul care s-a  ocupat de cazul lui acolo, ii incurajeaza spunandu-le ca situatia pare ca se indreapta spre bine. In aceiasi zi la ecografie  li se înlătură orice urmă de suspiciune şi li se spune că Siluan este perfect sănătos. Următoarea săptămână au făcut analize pentru depistarea existenţei CMV-ului.

A fost vazut  si de catre o alta pediatra care a sfatuit-o pe mama sa plece urgent cu el la o clinica la Targu Mures, insa la sugestia medicilor au mai ramas pentru a vedea rezultatele birubilinei si incurajati de cuvintele ecografistei au luat decizia de a astepta inca o saptamana.

Peste inca 3 zile, la control, medicul a ramas uimit de micul pui, de cat de bine arata si de culoarea pielii lui. Totusi rezultatele analizelor se lasau asteptate…mult prea mult…mult prea mult…Urma sa fie internati din nou saptamana urmatoare pentru a repeata un set de analize. Simona privea cu ingrijorare asta stiind dinainte cat de traumatizat a fost Micu dupa experienta de 4 zile in spital.

La inceputul lunii Mai merg din nou la spital pentru analize de sange si urina unde i se face un alt ecograf. Doctorii par dezamagiti, colecistul este  tot contractat si li se spune ca in opinia lor,  situatia nu se indreapta spre bine si  tot ce au de facut este sa plece la o alta clinica care il poate ajuta mai bine pe Siluan. Rezultatul analizelor inca se lasa asteptat….

Peste cateva zile, pe 10 Mai a sosit si diagnosticul: HEPATITA NEOANATALA CU CYTOMEGALOVIRUS.

Simona spunea atunci: “…e destul de complicat avand in vedere ca trebuie cat mai repede tratament ca sa nu ajungem la o faza critica cand salvarea e doar transplantul de ficat! Deja cautam cu disperare fiolele ce trebuie facute intravenos,timp de 21 de zile…si costa mult,dar pentru copil dam oricat! Plus ca are si o anemie mare, iar valorile bilirubinei sunt mai mari ca acum 2 saptamani!”

In 12 Mai incep tratamentul  cu antibiotic, dar Siluan face o criza de hernie si ajung din nou la spital unde este tratata temporar, si in paralel i se administreaza si antibioticul. Sunt lasati sa se intoarca acasa dar cu branula la manuta. Bebe pare fericit ca este din nou acasa insa mamica lui trece printr-o perioada dificila deoarece mai are doi puiuti acasa care au si ei nevoie de ea..

Peste doar 2 zile primesc un telefon de la spital prin care li se aduce la cunostinta ca analizele sunt bune si sa continue tratamentul cu antibiotic.  Insa noaptea ii gaseste din nou internati in spital, unde Siluan este supus unei interventii chirugicale pentru a-i corecta hernia.  De data aceasta medicii sunt foarte sceptici cu privire la starea micutului care pare-se ca avea probleme foarte mari cu ficatul, si le dau parintilor un nou diagnostic: HIPOPLAZIE A CAILOR BILIARE.

Simona descria totul: “Operatia a decurs bine,desi dr anestezisti au zis ca poate muri pe masa de operatie sau in 24 de ore..a avut risc 4!si asta datorita analizelor lui fff rele,DAR ne-a ajutat Bunul Dumnezeu!Nu va mai zic prin ce am trecut 2 ore cat a durat operatia,si apoi toata noaptea…nu stiu cum de mai sunt intreaga la cap.Sunt asa de terminata din toate punctele de vedere incat nu mai am chef sa mai zic nimic…”

Au ajuns iar acasa de la spital, cu branula la manuta,  instructiunile de a continua tratamentul cu antibiotic si…speranta in suflet. Intre timp se pregatesc pentru o noua etapa ce parea a fi inevitabila, …Fundeni…Bucuresti.

Ultimele analize facute indicau o scadere a bilirubine,nu foarte mare, si urma ca saptamana urmatoare sa termine tratamentul pentru ca  doctorii au decis sa reduca perioada tratamentului, iar daca va fi mai fi nevoie vor continua dupa o pauza de 1 saptamana.  Simona povestea atunci: ”…mi-e tare frica.Asistentele dar si dr zic ca s-a dezgalbenit mult,mie insa nu mi se pare sau mai bine zis mi-e frica sa mai sper.”

Urmatorul pas care urma sa fie facut, acela de la clinica Fundeni din Bucuresti avea sa fie amanat chiar la sfatul unui medic de la aceasta clinica.  Si totusi in 27 Mai se indreaptau spre Bucuresti,  insa spre spitalul Gomoiu de data aceasta,  de unde se intorc repede acasa cu tratament cu Predinson pentru 2 saptamani, incurajari ca totul o sa fie bine, si…sperante. Urmeaza o perioada in care Micu isi continua tratamentul si este supus altor analize si investigatii iar rezultatele oscileaza intre bine si rau. Situatia parea insa  sa fie tinuta sub control si toti sperau ca totul va fi bine …in sfarsit

Dupa tratament, in 18 Iunie i se repeta analizele de bilirubina si CMV la Bioclinica. Ca urmare a rezultatelor proaste se ia decizia definitiva de a se indrepta cu pasi repezi spre Fundeni. Din pacate drumul nu este asa usor si sunt rugati sa trimita datele cazului si sa astepte raspuns.

Intre timp situatia nu pare a se imbunatati, apar noi probleme, si este din nou internat la Brasov pentru ca ficatul ii era foarte marit, avea burtica umflata si plangea foarte tare. In greutate nu a mai luat decat foarte putin si asta era un semn de mare ingrijorare pentru doctori si parinti. Si din Bucuresti nu primesc nici un raspuns… din pacate.

In 18 Iulie, la exact o luna de cand au inceput primele demersuri, au plecat spre Clinica Fundeni. Aici s-a efectuat un alt set de teste, amanandu-se RMN-ul si de data aceasta. Doctorii vorbeau din ce in ce mai des de transplat, iar parinti erau efectiv ingroziti…Si totusi nimeni nu parea a grabi lucrurile, spunandu-le ca abia in Septembrie se vor putea face ceva…

Dezamagiti si cu ultimile puteri, Simona si George au luat decizia de a pleca in strainatate punandu-si toata increderea si speranta in mainile unor straini care le-ar putea salva ce au mai pretios pe lume, bebelusul lor de nici 6 luni care ii priveste cu ochisorii lui frumosi si mari si le cere ajutorul.

In 26 Iulie au ajuns cu Siluan la Munchen. A doua zi a fost admis in Salzburg, Austria, unde i s-a facut imediat biopsia si totul s-a desfasurat cu o viteza care pe parinti i-a uimit si nu le venea sa creada cum au pierdut luni de zile…zile pretioase pentru Siluan.

Doctorii au stabilit inca din prima zi un rezultat: TRANSPLANTUL HEPATIC era singura sansa a lui Siluan sa traiasca. Au confirmat ca este vorba de atrezie a cailor biliare si de ciroza hepatica.

Este greu de imaginat ce este acum in sufletul lor. Simona este la capatul puterilor, obosita de atatea luni de lupta. Numai speranta, increderea in Dumnezeu si dragostea fata de bebelusul pe care l-a purtat in pantec si l-a leganat in brate o fac sa mearga mai departe. George face naveta zilnic de la Munchen la Salzburg. Sunt obositi pana la extenuare si totusi spera…spera ca puiul lor va trai.

Hanovra va fi urmatoarea destinatie, unde se va efectua transplantul. Pana atunci se efectueaza teste de compatibilitate si se grabeste derularea evenimentului. Situatia este foarte delicata deoarece Siluan a facut complicatii in urma biopsiei. Dupa toate medicamentele luate timp de luni de zile, dupa toate testele si analizele la care a fost supus nici nu este de mirare ca trupusorul lui a obosit. . Doctorii sunt totusi optimisti si fac totul ca bebelusul sa poata fi salvat.

Aceasta este povestea unui sufletel de nici 6 luni care are nevoie acum de ajutorul nostru. Se estimeaza ca in total costul operatiei de transplant hepatic va ajunge pana la 126 000 Euro. Este mult, stim… dar din mic se face mare si cei slabi, daca se unesc puternici vor fi.

Acum Siluan are nevoie de bani ca sa poata  fi acceptat pentru operatie si sa poata trai. Multumim prietenelor doamnei preotese Simona Cecilia pentru realizarea acestei pagini!


8 răspunsuri la Povestea mea/My story

  1. Paul van Hoek zice:

    Good luck with Siluan, I hope he will recover completely and it is a miracle that he has survived this far!

    Warm greetings,

    Paul van Hoek

  2. olimpiu zice:

    Dumnezeu sa ajute sa treceti cu bine peste dureroasa problema.
    Dorim sa ne aducem sprijinul material!

  3. Pingback: Între oameni » “Vă rog să-l ajutaţi pe Siluan!” | Binefacere.ro

  4. **Iulia zice:

    As dori sa stiu cum se mai smte micutul Siluan, cum decurge pregatirea pentru transplant.
    Hristos in mijlocul nostru!

  5. Cristian zice:

    Oare cand in Romania se va practica si medicina? Oare cand medicii vor face TOT ceea ce este necesar si asa cum se intampla in alte tari? Cati trebui sa mai sufere din cauza ca unii nu primesc suficiente plocoane si milioane in buzunar? Cand vom ajunge si noi sa nu mai plece oamenii din tara ca sa fie tratati si analizati pe banii strainilor cand noi platim asigurari si medicii sunt platiti din banii nostri? Poate atunci cand vor muri de foame pentru ca toti romanii se vor trata in alte tari…

  6. Cristian zice:

    Dumnezeu sa va ajute si sa va dea putere si credinta…iar lui sanatate!

  7. Imi place template-ul. Cum se numeste?

  8. madalina zice:

    As vrea sa fac o mica donatie in contul DVS. Am nevoie de CNP-ul titularului. Multumesc !

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