“I am grateful to every person I came across in my life. To some – for help and support, to some – for a leading example, some – for a lesson learnt, and to others — just for their existence in this world.”
Our story began 19th of October 2012 when our longed twins, Sasha and |Daniel, were born. It was a premature caesarean labour on the 32nd week. Sasha’s weight was 1 kg 640g and height – 43 cm.
That rainy morning I woke up with a horrible feeling of anxiety. Something was wrong. I was bleeding. But I woke up in the right place at the right time, I was already in hospital under doctors’ supervision, otherwise my little darlings wouldn’t have survived. It might raise a question why I was already in hospital, but I don’t want to blame anybody and it is a separate story I don’t want to dwell on…
My babies were urgently placed to Intensive Care. Sasha’s scary diagnosis followed one another: perinatal hypoxic-haemorrhagic lesions of the CNS, CNS depression syndrome, intraventricular hemorrhage grade 3 intraventricular occlusive hydrocephalus, convulsions …
Doctors didn’t promise anything, they seemed to be giving hope one minute, and the next minute took it back… Everything seemed like a nightmare dream. I don’t think we have ever cried as much as over those horrendous 2 days of waiting.
We baptised our babies on the second day. Without God parents and other happy attributes of happy Baptism, just the Priest, babies and Faith.
While I was in hospital and recovering after the surgery I had an opportunity to visit my babies every 3 hours to bring them breast milk they were given through a tube.
These brief visits were all I had and every time I was trying to pull myself together and enjoy every second of it, but I struggled. Every time I saw them, tears were streaming down my face. Looking at those tiny bodies it was very hard to believe that one day they will wake up and everything will be all right and we will be together.
When other women in hospital were brought their babies for feeding and I was lying there on my own, all I could do is bury my head in the pillow trying not to sob and scream with despair and just cry silently.
In 6 days I was released home. Some repair works started in the building as such we were not allowed to visit our twins. But we still came every day and waited in the waiting room for the doctor to tell us about the progress. Every new day gave us more hope in the next one.
Intensive medical treatment continued with numerous courses of antibiotics, drainages and checks. An external ventricular drainage was fitted to Sasha’s scull to allow excess cerebrospinal fluid come out and not accumulate inside. Shortly afterwards – another one. It did not help. Hydrocephalus progressed, the pressure increased, the head was growing in size. Even then, our Sasha – a small, helpless, but at the same time a very strong girl – suffered more than most in a lifetime.
Her brother Daniel was recovering and after long 1.5 months he was finally released home. Sasha though was transferred to a different hospital to decide on further course of neurosurgical care.
Sasha’s first surgery was on the 12th of December when she was 1.5 months old. ““Endoscopic 3 ventrikulotsisternostomiya; endoscopic septostomy; bilateral pleksektomiya;transakveduktalnaya plastic holes Magendie and the craniocervical junction; stenting holes Magendie and craniocervical junction.” In normal words, adhesions in brain fluids were endoscopically divided and a standalone stent was fitted to drain cerebrospinal fluid.
It was a very disturbing sight to look at our girl after the surgery. Due to the liquid outflow, her head was deformed, she was swollen and there were neurological anomalies. But the post recovery came to an end and she became better, had some colour on her cheeks and had a nice smile and 2 weeks after we were finally home.
We sighed with relief, hoping all the worst was behind. But we were wrong… Next 1.5 years we were in and out of hospitals.
9 hospitalisations, rehabilitation courses, 6 surgeries, loads of punctures through the fontanels and spine to relieve the condition and diagnosis, a lot of general anaesthetic procedures.
We’ve already had 12 MRI scans, each one under general anaesthetic. Drop counter, injections, pills catheters, endless checks and a tiny girl can’t understand why Mummy says “I love you” and then hurts you…
3 weeks after first surgery Sasha got worse. She stopped sleeping and couldn’t stop screaming. . It is still scary to think of those sleepless nights when Sasha could only fall asleep for a short period of time only being in your arms… Later doctors prescribed her Diakarb, medicine that decreases the amount brain liquid and blood pressure as well as appetite that we had struggled with even prior to that. It helped for some time, and then stopped after a month…
The second surgery – stent revision- Sasha had when she was 5 months old. The doctor tried to convince us that the child grew and the length of the stent is not sufficient enough. We had a feeling that we needed to fit a shunt – a system of drainage of cerebrospinal fluid directly from the ventricle into the abdominal cavity. But the doctor talked us out of it. We trusted the professional and the shunt wasn’t fitted and after that everything got even worse, problems with eyesight, worsened condition, further delays.
A shunt was finally fitted when Sasha was 10.5 months old as the stent proved not to be working.
It was an unregulated shunt Medtronic Delta medium pressure (70-90mm) which can alter based on the child’s position. The next question we raised why not an adjustable pressure straight away? The answer was that it suits perfectly fine for children of this age group.
Sasha’s condition improved, but once again, not for long. In 2 weeks’ time a liquid bump started to grow on the pump part of the shunt system on Sasha’s head. We were told that that is normal for these condition and you just need to bandage the head until the bump disappears. But it didn’t work and it kept growing. After another week we had another surgery. Turned out the catheter was blocked and couldn’t release any liquid, as such the bump appeared. The surgeon was a real professional and replaced the catheter with a larger diameter one with more wholes to let the liquid out. It was him who after almost a year will finally fit a regulated shunt despite other common opinions against it. Thank you for everything, Dear Jurij Andreevich!
We were discharged again. Everything was relatively all right, apart from the fact that a bedsore appeared where the pump was connected to the catheter. That was due to the poor fitting of the pump which was rubbing the skin inside. We had to come back to hospital in 2 months when a catheter burst, all liquid flooded into a weak spot and a bedsore burst. Again Jurij Andreevich assisted. We had another surgery the next day where he removed the bedsore and re-installed the catheter and moved the pump to a better spot to prevent further bedsores.
We started intense rehabilitation courses. Now all our time was dedicated to home and specialist therapy: Therapist – twice a week, kinesio – teyping expert — twice a week, Vojta therapist – once a month, osteopath – twice a month, physiotherapist, neurologist, ophthalmologist, home workout method Vojta – 3 times a day for 40 minutes, Castillo – Morales method exercises– once a day for 20 minutes, hearing, vision, sensory and intellectual classes – 3 times a day for 20 minutes. And the positive results didn’t leave to wait for long. Sasha became more active, she could lift herself on her elbows lying on her belly, had a few teeth at the same time, could make some noises, syllables, learnt to say “ Ma-ma, Ba-ba, Yes, etc.”, started to sleep on her stomach, focusing on your eyes and eat from the spoon. There was no limit to our joy. Sasha filled us with optimism, gave us strength and we were working hard all together. But in 2 months the progress came to a halt. Dystonic attacks increased, reflexes and general condition worsened.
When Sasha was 1 year and 11 months old, we ended up in hospital again. MRI scan didn’t show any negative dynamic in the expansion of ventricular system, so some experts of the Medical Centre considered everything was in order and no further intervention was required despite our concerns.
And once again Yurij Andreevich helped us and thought that the combination of minor changes like changing of the scull shape and growing of temples, worsened neurology conditions and eyesight, no further development and so on prove that the medium pressure of unregulated pump is not working and it has to be replaced with an adjustable Codman Hakim to reduce the pressure and increase the outflow of cerebrospinal fluid from the brain and improve the overall condition. To prove that, the pump puncture showed that the brain pressure was twice over the limit. He explained everything to us and left a choice to us. Without any hesitation and with total trust we made our choice. The surgery went well and now we are home.
Sasha’s condition is stable now. She smiles and enjoys life as much as she can in her condition. She understands everything and is a very cuddly girl who loves kisses. She is a very optimistic and emotional child. Of course daily care is a very difficult task. She has a bad appetite which makes feeding a challenge as well as the practicalities of bathing due to the inability to hold her head. We can’t afford to buy special equipment designed for children with these conditions as such for now its Daddy’s job! Walking can be tricky as starts crying every time the pram stops, disturbed sleeping, constant pills… But we are prepared to fight further and we are ready to do anything for our sweet little girl. We know that she is a little fighter we just need to try hard! And when we look into her eyes, so not childish, I know that we will do it!
On a separate note, I want to say how grateful I am to our amazing Daddy who has done so much for us and our family.
He became a Mother and a Father to our son Daniel when I couldn’t be beside him Sometimes the boy even didn’t recognize me… But Daddy was always with our son, looked after him with love and dedication, changed nappies, fed him, walked him, and played with him. Not everybody is capable of such dedication and commitment. Thank you my Darling, for your love and care and for your outstanding dedication to our children. I love you so much!
We don’t want to play a blame game and accuse anybody. In any case, we are very grateful to people who helped us and supported us on our hard journey.
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