Our life is only 10% what really happens with us and 90% this is how we react.
Chapter 1. Pregnancy
We got married 24 December 2011. We were 23 and 26 years old. We had no plans to have a children in the nearest future. In first, we just married and wanted to live a bit for ourselves. And the second, we could not to reconcile with one thought. The World we live in is far from perfection and year by year people and moral standarts become worse. To raise a kid in such a conditions is not an easy thing. And to educate him as a good man is more difficult. Moreover my wife lost her mother when she was young. That is why she was scary to think what there is a possibility to lost our future child. But two years after our marriage my beloved wife got pregnant. For five months we didn`t know anything about it. Failures in a woman's cycle was usual thing for my wife. The growth of breast she explained as a result of her new diet. And splash of emotions and quarrels explained by short time in the marriage. She never had such a things like toxicosis, nausea or something else. So half of pregnancy passed insensibly like one day.
The first thoughts about pregnancy came just after stomach began to grow. It's because my wife is quite thin. But still no one of us couldn't believe in it. Even two stripes on pregnancy test my wife questioned. She couldn't believe what life appeared inside. Only confirmation from doctors and positive analysis made us sure. It was a middle of May 2014 when we have learned about child. Well, we had to learn about his sex. But first “miracles” began to occur.
Chapter 2. Wonderful gift
As a family head I have been in shock and prostration, when I have learned what there will be a baby. My mind could not to plan our family life as it was earlier. I understood what it's a big responsibility and there will be a lot of spendings. I began to think, what kind of father will I be? Can we raise our child and educate him properly in this difficult world? During two days I have been in such a condition. After it, I become able to accept congratulations from my friends. We wanted to learn about sex of the child as soon as possible in order to tune ourselves on education of a boy or a girl. Although the men more often want a boy in order to share with him his skills and experiences, but to raise a girl is also interesting in my opinion.
My wife signed up for ultrasonography and I waited for the result with impatiently. After the procedure my wife called me and asked, whom I most want - a boy or a girl? I answered – a boy, but if it is a girl I'll also be glad. Her answer struck me like a lightning. I thought that after the news of the pregnancy there is nothing to make me surprise, but I was wrong. We'll have twins! Two boys! I did not know how to react, and so I just smiled nervously into the phone. My anxieties multiplied by two. And only after a week or two I understood how happy is this news. But the value and uniqueness of this beautiful gift I felt in full measure only after I lost it.
Nowadays, twins and even triplets are not uncommon, because there is IVF. And many women having agreed to IVF procedures typically pregnant a few fetuses. But naturally it is much rarer. It is believed that twins occur in those families who already had a twins two generation ago. Here we have to make a retreat, the fetuses calls twins in every cases of pregnancy with two. And it doesn`t matter, was it two fertilized eggs or one, that was divided. The uniqueness of these pregnancies are different. For example, there are identical twins and fraternal twins. In the same time identical pregnancy divided into several types. Twins may be in the same placenta and amniotic sac without partitions between them, and they may be with partitions in different pouches, etc. Fraternal pregnancy can be easily explained by the presence of two eggs in a woman during fertilization. But nobody can explain identical pregnancy. The doctors explained to me that science is still unclear why at some stage the fertilized egg begins to divide suddenly into two identical organism of the same sex. If you believe in God, this is according to his will. If you are nonbeliever, no one in this world won't tell you why this is happening.
According to statistics, identical twins occur one time on the 1000-1500 natural pregnancies. The uniqueness of such a pregnancy is evident. Children is a gift from God! Scientists can observe the process and the formation of the new man in the womb, but they can not to explain why there is a particular process at a certain time.
Chapter 3. The terrible diagnosis
To our surprise the belly began to grow very quickly and just two weeks after the first ultrasound it became huge. Relatives and friends said that this is due to the fact that we had twins. But it didn't make my wife feel easy. Every day it got worse, she could not lie on her back, get up quickly and walk. The doctor of the women's clinic, who supervised my wife, went on vacation. To make the ultrasound in another place needed money. What is why we decided to wait for our doctor. When he returned, he diagnosed acute polyhydramnios and quickly sent my wife to our local maternity hospital. Thus, June 3, 2014 my wife was hospitalised in the obstetric department of the city hospital №33 Kolpino, St. Petersburg. It is not the best medical institution if we talk about appearance and specialists. Our duration of pregnancy was 22 weeks and 2 days. After two days of examination the doctors diagnosed - TTTS (twin-to-twin transfusion syndrome).
*Twin-to-twin transfusion syndrome (TTTS, also known as Feto-Fetal Transfusion Syndrome (FFTS)) is a complication of multiple pregnancies, or more precisely, it's a patology of placenta. Normally, arteries and veins (anastomosis) in the placenta works in both directions, between the fetuses. But when the placenta has formed for our children, there was a deep artery inside in which blood flows only in one direction. Thus, there was an imbalance between the fetuses, and discharge of blood from one child to another began to occur. As a result, one child became a donor, and another one became a recipient. For one child anemia began to develop due to lack of blood, for another one - heart failure due to a large inflow of blood. For more information, please visit a website devoted to that issue – www.ttts.ucoz.net (Russian).
Since the treatment of this disease is almost no one engages, both in our country and throughout the world, such institutions are very few. Earlier this pathology treated only by abortion in order to eliminate the risks to the mother's life. In our country, such a method still in practice. That is why this pathology is poorly understood, and no one still cures it. After sitting for a few days on the Internet, I realized that until 2010 FFTS treated only in Germany (Halle, Professor Michael Chirikov), in some cities of USA (Philadelphia and California). Some medical institutions of St. Petersburg and Moscow just started something to try. Treatment existed, but its effectiveness was negligible and the risks are very high due to the limited experience of gynecologists.
According to the local doctors, it is impossible something to do in this case. The risk of death for children and their mother was very high, so they were offered a termination of pregnancy. The doctors said that during four or five days my wife's waters will depart and preterm labor will begin. The result will be lethal for the children because of such an early period. Either, because of the heavy load, placental detachment from the uterus will occur with abundant internal bleeding. Such a situation could lead to the lethal result for mother. Child survival at birth at such an early stage is only 3-4%. And if they survive, then, because of the long period under artificial respiration, they may develop severe pathologies and may become profound disabilities - deaf, blind, cerebral palsy, dementia, etc. In fact, we had such a choice - the life of wife and death of children, or the death of all of them.
Tears streaming down our cheeks when we realized the loss of our children. That day was the most difficult in our live. All the day my wife watched at one point and gave monotone answers on my questions, without any life in her eyes. All the joy of waiting for our children disappeared in one moment. Never in my life I have prayed so much in a single day. Feeling helpless, we had to rely only on God. Perhaps in such a situation people start to believe in God, if they were unbelievers.
Chapter 4. Hope
Seeing our desperation, doctors decided to help us as much as possible in our situation. They said that they will contact the professor Mikhailov from 17th maternity hospital. He specializes in such severe and rare cases, such as ours. If he will undertake for us, our children will have a chance to survive. If not, then we have no one to help. And though they could not get through to the professor, because he was in another city at the symposium, but his assistants decided to accept us.
June 5, 2014 we were taken by ambulance to the 17th maternity hospital (Lesnozavodskaya st. 4, St.Petersburg). The first thing that caught my eyes was the appearance of the hospital and its equipment. It was evident that doctors working here are much more professional. We just had an ultrasound revealed acute polyhydramnios - 9 liters of amniotic fluid at such an early period.
Obstetrician-gynecologist of the highest category - Romanovsky Artem Nikolaevich and his colleague Anastasia Vladimirovna Novikova became our doctors. They corrected the diagnosis of previous doctors. It turned out that we have diamniotic twins. It's mean what there is a partition between the kids. But not monoamniotic twins without such a partition. My wife was immediately taken to the hospital and on the same day the first operation was appointed - Amniocentesis with amnioreduction (pumping or draining of amniotic fluid). According to doctors, to conduct a radical surgery (laser coagulation of anastomoses in the placenta) was too late. The laser can not cauterize the thickness of blood vessels, which is why there was a high risk of children's death. But at last we had hope, for which we were very grateful to God. All treatment and staying in this modern hospital was for free, but for each operation of pumping fluid we had to pay.
*Amniocentesis with amnioreduction did not treate our pathologies, but prolonged our pregnancy. Due to the fact that our placenta has been formed to give a lot of water to one fetus, the arrival of the amniotic fluid was constant and inevitable. Thus, the pumping of the excessive fluid returned our pregnancy to the "normal" state, and eliminated the risk of preterm birth and placental abruption because of heavy load.
The operation was successful. Six liters of amniotic fluid was pumped out. Belly decreased by 2-3 times. She began to feel the children. After a while my wife began to limp on her left leg. When I visited her, and we walked to a nearby park, the foot began to swell, and she could move with great difficulty. The doctors of the hospital said that apparently, some nerve was pinched in the pelvis. “It happens with pregnant women, do not worry”. They gave prescription to drink painkillers and advised to walk as smaller as possible, and more to lie with outstretched leg in order to decrease the swelling.
Soon it turned out that the hospital will be closed on June 28 for aeration. So on June 23 we had another surgery to remove amniotic fluid. This time, only 4 liters of fluid was pumped out because the child was constantly moved and tried to touch the needle in his amniotic sac. Our doctor and his colleague have assured that they will not throw us in the lurch, and they will prompt where to refer for further treatment. But, unfortunately, this has not happened.
On June 24 my wife was discharged from the hospital, as well as many others. Taking a wife from the hospital, I have not met a single doctor who participated in our treatment. Therefore, we didn't get any recommendations where to go and what to do next. For me it was a little bit strange, but expected. When doctors in a hurry to vacation, they forget all about their duties and especially about little known patients that they had to treat.
Chapter 5. Search help
I began to call to the various medical facilities in St. Petersburg, looking for the hospital that can take the next surgery - make the pumping of amniotic fluid. It turned out that there is no such a procedures in any hospital in St. Petersburg. So there is only two medical institutions that specializes on rare and severe cases - "D.O. Ott Research Institute of Obstetrics and Gynecology" and the "Federal Almazov North-West Medical Research Centre". In "D.O. Ott Research Institute" I got contacts of Elena Andreevna Shapovalova - gynecologist of the highest category. I contacted her to make an appointment. She said that if she will take us in such a condition, then we will be obliged to be hospitalized, because we should not be at home in such a serious condition. It turned out that after two weeks they will be closed for aeration and repairs too. Therefore, the main doctor can not take us with such a diagnosis, since it requires long-term treatment and surgery. I realized that the Institute of D.O. Ott is not suitable for us.
The last chance for us was "Federal Almazov North-West Medical Research Centre". Me and my wife started to pray even harder, because we understood that the assistance from the doctors is not a thing we have to expect. In this world we are alone with our problems. We went to the Almazov Centre. In order to pass ultrasound examination by a doctor and an obstetrician-gynecologist for free, we had to take the direction from women's clinic in the community. But our doctor from the women's clinic was somewhere on vacation again. But to my surprise I was able to get everything we needed without even a fight. In the entire history of women's clinic in Kolpino we were the first and the only ones with such a rare diagnosis. The rarity of our pregnancy and its pathology was overwhelming for some doctors. July 2, 2014 me and my wife arrived in "Federal Almazov North-West Medical Research Centre". We had a lot of impressions. Although we have heard of its uniqueness, scale and equipment, but this center actually very surprised us, both inside and outside.
We had an ultrasound and then we got an appointment with the obstetrician-gynecologist Turskaya Maria Olegovna. She said that there is no free places and it is very uneasy to get them. She checked all our documents from the woman's clinic of Kolpino and 17th maternity hospital and said that today she will submit the documents to the Commission. If they take us for treatment, they will contact us and say the date of hospitalization. We had chances, but small. Our prayers on that day did not stop!
She also reminded about our difficult situation, about the risks of child mortality and the risk of disability. Luckily we got a call at 6 p.m. and they said that they are ready to accept us, but after eight days on July 10. It was the second week after the last operation to remove the amniotic fluid. I was afraid that something bad can happen with my wife, since her stomach greatly swelled again because of waters. We were given a reminder that if we get worse, then we can come before July 10, using ambulance or by our own. Every day at home I saw how painful and difficult to my beloved wife to live with such a huge belly. I realized that we may not to hold out until July 10. I was so afraid of premature birth or internal bleeding because of polyhydramnios. Therefore, I couldn't sleep and work, knowing that my wife is at home when she must be in hospital under the supervision of doctors.
Pain and swelling of the left leg did not stop. On July 5th me and my wife went for an examination and ultrasound to phlebologist. It turned out that my wife had deep vein thrombosis in the left leg. That is why she felt pain and the leg swelled. Doctor recommended us immediate hospitalization. We called an ambulance and, with small obstacles in the reception desk of the Almazov center, my wife was hospitalized. All these two months, I was in shock. Why we got so many trials and challenges? For what? Only one thought soothed me: God does not allow to test us beyond our strength. So, we can handle it and not to despair and give up.
Our next test came literally within one or two days after admission. By studying our case, doctors of Almazov Center faced a difficult dilemma. On the one hand, they want urgently to treat a blood clot, but because of the pregnancy, it was impossible to use fraxiparine - the blood thinner. Because, if preterm labor will suddenly begin, the mother may lose a lot of blood. Therefore, in the beginning, they appointed compression stockings and ultraviolet blood irradiation. Later they began to stabbing fraxiparine, periodically interrupting for a day before surgery – amnioreduction. The belly of my wife was huge again, and she almost did not leave her bed for a week. The device in the Almazov Center which is pumping out of amniotic fluid, was designed for a volume of 2 liters. So after each filling it began to slow down and off. Therefore, after 2 liters of fluid has pumped, they tried to pump out more using syringe. But every time nothing to came out, and this process was finished. Each operation, each puncture of swollen abdomen accompanied by terrible pain for my wife. She endured as much as she could for the sake of the children, but the pain became so severe that she could not withstand these operations. Every three days operation was repeated, and each time they tried to pump out as much fluid as possible, but always all ended at 2 liters. Regular droppers and recoveries after operations brought my wife into depression. She felt like a guinea pig for experiments.
After several medical consultations doctors concluded what caesarean section is needed, because wife and children got worse, and two liters of amniotic fluid, pumped out after each surgery, returned after three days.
Chapter 6. Childbirth
On the morning of 18 July 2014 a cesarean section was carried out. Our children Oleg and Mark were born. The first one (recipient) had a weight of 870 grams, the second one (donor) - 790 grams.
The first one went to the intensive care unit, the second one - directly into the reanimation due to anemia. After two days his older brother joined him in the reanimation department, because of problems with the assimilation of food. Later, the state of both became extremely serious. The second child got anemia, kidney failure and lung problems. The first one was diagnosed with a massive brain hemorrhage and ventricular hypertrophy. They were very weak and did not look like children - thin and red bodies with an almost transparent skin.
Our pathology showed itself in the fullest sense, and all the risks, of which the doctors talked about earlier, began to come true. On July 24 at 7.30 p.m. the doctors diagnosed the death of a second child. As it turned out, his kidneys were killed in the womb, which is why he had no water in his amniotic sac, he did not swallow the liquid and did not piss.
Some women find that a caesarean section is lighter and easier to carry than natural childbirth. But it is not really so! Even after all the suffering that my wife suffered, she speaks about caesarean section as the most terrible event in her life.
Chapter 7. The fight for life.
Almost three months our "second" child Oleg has been in the Almazov medical center. The whole month we were allowed only 5 minutes in a day in the reanimation department to look through the glass at our son, who was in the incubator. During one and half of month his condition was diagnosed as extremely serious, without any changes for the better. He continued to be under artificial respiration and was fed through a tube. Our hope was almost exhausted. Everybody who could and who knew about our case were prayed for us. The rate of breathing for newborn baby is 60 breaths per minute, our son had only 6-8 breaths. It was too painful to look at my tiny son, knowing that I can`t help him in any way. My heart was breaking apart. Our doctor, who for one and a half months have not seen any changes for the better, said that we should not despair. Now it all depends from the child, and from God, if you believe in it. Sometimes newborn babies can make wonders, and everything can change. A huge potential was put into the children and they can survive in such a situations when even adults can not.
August 22, 2014. After we were allowed to stay with him a little longer, and even touch him in the incubator, on the very next day the breathing of our son began to improve. That was something we did not expect. After three days, doctors removed a breathing tube and began to help him to breathe not invasively, using a mask. It was the first good news for the last six weeks! We were very pleased with this and literally jumped for joy. It is interesting that my wife was discharged a week after birth. To visit the child we had to travel long distances from home to the Almazov perinatal Center.
Although the foot was still sick and swollen because of thrombus, my wife began to visit our son every day. Every day she spent three hours on the way to the medical center and back, in order to sit with him for only 10 minutes. These 10 minutes "charged" both of them. My wife was given a strength to endure and be happy, and our son was given the power of maternal love in order to recover.
A week later he was able to breathe without a mask, the mask just lay next to him, just in case. Also, he himself began to eat and to gain weight very quickly. In early September, his weight was 1400 grams, but in the beginning of October he was 2800 grams already. Later, he was transferred from reanimation department to the intensive care unit. Our doctor sincerely wished us not to meet with him again, and wished a good recovery. Although after a week our son returned to department with pneumonia, doctor said that for the time our son is much better than before. Pneumonia is common thing to children with breathing problems.
26 September 2014. We got a call from perinatal center and they told that my wife can come to care about her son on a permanent basis. There remained only one problem with breathing (apnea).
Occasionally the level of saturation fell, and when sensor began to beep, someone had to bother the child, in order he began to breathe again as before. It turns out that this problem happens even with healthy children.
*Apnea is a delay of breathing of young children during sleep - a rare, but terrible enough phenomenon, which can occur for various reasons. Basically, apnea occurs in infants who were born preterm and prematurely, because breathing control centers in the brain have not yet formed.
The smaller the period in which the baby was born, the more chances to get breath delay, but fortunately, with age, this problem goes away.
With regard to bleeding in the brain, doctors said that there are changes in the brain. But which part of the brain has been affected and how much? Will it be recovered or not? They could not tell. During sleep, facial muscles near the mouth and eyes occasionally twitching. And there are cramping sometimes. Doctors still can not explain why this is happening and will it pass away or not.
Hemorrhage was extensive and touched different parts of the brain.
A year later, we got the following diagnoses and disability:
- Bronchopulmonary dysplasia
- Atrophy of the optic nerve
- Hearing loss
- Rough delayed psychomotor and speech development
- Cerebral palsy, spastic tetraparesis
I have never thought that one "great day" will change my life so much, and I'll turn gray.
But I believe that God does not allow to trials to overstep your ability. And even in my situation, you can learn a lot.