My Story (English version)
Letter for the soul
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 priest George Bota and his wife Simona. 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, 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. 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). 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 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. Simona was concerned about this, knowing how traumatized was Micu 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!
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.
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.
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, Simona and George decide to go abroad and put their trust and hopes in the hands of the foreign doctors who 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 confirmed the diagnosis of liver cirrhosis caused by an infection with CMV, a very dangerous virus.
It’s hard to imagine what the parents are going through. 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. George is commuting daily from Munchen to Salzburg. They are tired to exhaustion but they still have hope… hope that their baby will live.
Innsbruck 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 Simona could tell you the story, but unfortunately she’s not able to that right now.
Simona and 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 100.000 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…