Natia Aptsiauri, 23 years old, Tbilisi
I got married as a student. My husband and I were young, so we were in no rush to start a family. We were planning though. However, it turned out that I became pregnant unexpectedly. I had a difficult pregnancy with high blood pressure. Seven and half months pregnant, I got my blood pressure gone so high that no medicine helped. Ultrasound showed preeclampsia, that means the baby had a problem with oxygen provision and was in danger. Doctors demanded that I must have stayed in the hospital for three days. For not to make me worried, they weren’t telling me about high blood pressure. On the third day, when the pressure went particularly high (170/110), they had to make a Caesarean section. At birth, the baby weighed 2.300 kg that is a quite normal weight for the premature, especially for such an early delivery. At first, he had a problem with one lung, so they placed him in an incubator. I saw my little darling the next day, both of his lungs had been already functioning, so they started feeding him giving 5 grams of food each time. The second day, they gave him 10 grams of food and then, on the third day, they increased portions to 20 grams. The same day, they performed scheduled cranial ultrasound on him which showed a bruise, hematoma. We got rather alarmed, however, neurologist reassured us that it could be solved, reabsorbed, that it happened mostly to premature babies.
In the intensive care unit visiting hours started at 3 and lasted for just 30 minutes. The same day, when we went to see the baby, he had his belly slightly bloated and cried. When we asked what had been wrong with him, we were told us he’d been hungry and hadn’t had enough food. Shortly after he spewed up what he had eaten and his belly got bloated again. Tests showed raised leucocytes, Erekle had his stomach constantly bloated and felt sick. All the family, we gathered at the hospital. A doctor told us he’d made an X-ray which showed the baby’s bowels had been seriously bloated. He also said he’d prescribed him medication to reduce flatulence, stopped feeding him sending his samples for tests and that he could do nothing more, so we could go home. My mother, however, felt anxious as the baby looked pale and had his stomach seriously bloated, and, as I was still at the hospital, she told me to go and see him. As I went down there, I found a pandemonium with doctors running around trying to connect Erekle to the medical ventilator and waiting for the surgeon and head physician to come. I was horror-struck when they asked me whether my three-day-old was christened. Desperate, I called my family and asked them back. We christened him that very night, before the operation. The operation started at 4 am in the morning. The surgeon said he couldn’t give us any guarantees as the baby’s colon was ruptured. The operation lasted for two and a half hours. Time passed slowly and my heart was sinking, horrible thoughts came to my mind. I was confused, couldn’t believe this was happening to me, that the life of my son was at stake.
Erekle had some kind of adhesion on a colon preventing oxygen provision, and his intestines turned all black. After removing the adhesion, some part of the bowels recovered its natural colour, and the other part, restored in a way, but not completely healthy, they also didn’t remove in a hope that it would get better and they wouldn’t have to reduce it even more. During the first operation, they’ve removed 25 cm of the bowel. After 48 hours, when the baby got over immediate postoperative phase, excretion didn’t restore, so for fear of worse, another surgery was performed during which large part of the bowel was removed. They removed all, even slightly damaged tissues making the bowel significantly shorter. They’ve moved the colon outside warning us we wouldn’t be able to take care of him here in Georgia and we should take him abroad as soon as his condition stabilizes. There we’ve first heard the term short bowel syndrome.
He underwent five operations in three months. The third operation of putting back and reconnecting the colon was performed because of skin problem; the fluid that leaked from the colon made his skin sore and poor baby was in terrible condition.
Other two operations followed at ten-day intervals. Due to so many surgical interventions cobweb-like webs, adhesions, occurred in his abdomen blocking the colon. He required to open those adhesions twice. There is a special liquid to open them. It is not available in Georgia though. Even if you bring it from abroad, they don’t know how to use it. Two of the surgeries were performed just because they didn’t have any experience and knowledge of adhesions treatment. Meanwhile, we were trying to find out about treatment possibilities abroad. We also thought about colon transplantation, but everybody was against it since that kind of surgical procedures is still poorly explored and unsuccessful. We couldn’t find any doctor who would take responsibility for intestinal transplantation.
We found a very famous doctor in Moscow instead, who works with the patients having similar problems as Erekle and helps them to survive. It took us a month to raise funds – estimated cost of the treatment they’d offered was 40.000 USD. People supported us most. We had some state support too. We managed to go to Moscow in a month. Examinations revealed that instead of 50-60 cm the baby had 20 cm long bowel which is extremely short but not hopeless. We hope at best the bowel can be lengthened from 20 cm to 45.
The 4-6-hour surgery alone costs 20000$ (STEP procedure in which surgeons lengthen the amount of bowel available to absorb nutrients). In case of children like Erekle, the most expensive thing is medical supplies with a cost of approximately 3700-4000 USD.
Apart from the operation, treatment includes periodic intravenous nutrition. Erekle requires parenteral nutrition for a long period of time after the operation and at puberty too. However, all these are followed by many complications with the liver problem being the number one due to a lot of strain.
In Moscow, they train parents of the patients like Erekle to take care of their children. Thank God, I’m not a type of the person who gets scared at the sight of a needle. The hardest thing for me was to change catheter dressing. At first, everything made me anxious. You should throw a needle away if its tip has been in contact with something; If you don’t like the colour of medicine, you should get rid of it; Hygiene standards must be kept at its best etc. All these take me 50-70 minutes a day. As for the infusion tubing, you should remove and replace tubing and cannula once a week, and catheter bandage once in 5-6 days. In addition to these, the process of connecting and removing the tubing; It is not easy at all to do together a parent’s every routine.
As I said, we had some state support too and hope to get some more in January, but the costs are huge. Intravenous feeding of the baby requires huge funds annually. We need those permanent supporters who would support us every month. It’s been almost two months since we’ve been raising funds for medications, the amount raised is not quite enough though. But, of course, I profoundly grateful to all our supporters for what is raised! We need to raise funds for January too, about 40.000 USD. Our surgeon is expecting us in January, and then it will be decided whether they will perform the surgery. I guess they will, since it’s hardly possible this 20-cm bowel to grow significantly without surgical intervention…
We are terrified of viruses as they are very dangerous for the baby. Many of our supporters want to come to see Erekle. We are afraid and refuse though, can’t take any risks. In Moscow, in the hospital, he got infected with some banal three-day virus infection, and we had to fight it for two weeks. Here in Tbilisi, there is also a problem of taking him for a walk. In Moscow, we have spent last two weeks at home, but haven’t encountered the same problem – it’s comfortable to walk the baby in a carriage there, no problem either with walking on pavements or taking public transport. It’s not the same in Tbilisi. I manage to walk the baby at best in 100 meters from our house when my husband’s not at home to help me. My mother-in-law helps a lot doing all the household chores as I have no time for anything else except for taking care of Erekle.
When you’re pregnant waiting for a baby, you can’t stop thinking whether the baby will be born healthy, having ultrasounds and things. However, no person can possibly imagine beforehand what we had to go through. You make plans of decorating the baby’s room/corner, decide on what clothes to buy, cheerful stuff like that… But not whether he’ll survive the surgery, come to, or if he/she’s going to be normal.
Especially in case with Erekle. Due to his health problems, he won’t be able to go to nursery, stay at friend’s at night, eat fried food or play outside like any other child. Catheter needs to be thoroughly bandaged before washing or going in water. It’s hard to think about the future like this and not to get scared. At the same time, you should make your best the child to grow a full-fledged member of the society, be communicative and sociable. I don’t know If hearing problems will add to these… However, we still hope the hearing problems are solvable. He can hear loud sounds, yet still doesn’t respond to conversation. There’s a chance his hearing will get better until he’s one, otherwise, we’ll have to provide him with hearing aid.
Most of our society, they don’t fancy the disabled – we all know that. Unfortunately, Erekle is disabled, and we soon are going to take relevant documentation. However, at the same time, Erekle has a huge army of well-wishers, and that is what makes me sleep at night. I would like people to know that his illness is impossible to cure in one year, that he needs medical control and medications constantly, even in his teenage years, so we really need permanent supporters.
If you wish to support Erekle, for donations use following bank details: Recipient – Jimsher Danelia ID number: 01008038232 Bank of Georgia: GE60BG0000000041739800, TBC Bank: GE90TB7320645061100014.
For updates about Erekle’s health state visit his page: https://www.facebook.com/erekledanelia2017/
Author: Nino Gamisonia
Photo: Sopho Apstiauri
Translation: Nina Suramelashvili