Julinka

Juliet’s story

The older I get, the more I realize that everyone bears their own cross and the death of a child is one of the most difficult trials of life. Those who have not experienced it cannot imagine the pain, helplessness and emptiness of a parent who cannot help their child. In the end everyone is left alone in his despair.

The doctor of the children's emergency department at Bulovka sent us home with our six-month old girl twice. I have trouble forgiving him even after the five years that have past. After a sleepless night we did not let the doctor to overlook us again. We requested a pediatrician who promptly transported us by ambulance with suspicion of pneumococcal meningitis to Karlov - child accident ICU. All that was needed was a simple CRP test costing fifty crowns. It was carried out too late – the level was already 350.

Waiting in a closed hospital department, where there are pictures of children thanking the doctors for their dedication. Feeling the great desire for our picture to be there as well, while sharing tight hugs and tears with my husband.

Our worst nightmare came true and the pneumococcus infection that attacked Juliet's brain was confirmed. At home we found out what a horror we are dealing with and the option of Juliet “just” losing her hearing seemed like a victory to us. The doctors are confused, our baby must be put into a forced coma, the kidneys are no longer functioning, and Juliet is connected to extracorporeal circulation.

The care of doctors and nurses is perfect. How do they sleep at night? How do they sleep when they work in a place where the success rate of treatment and intervention is more like 20 per cent than 80 per cent? All these injuries, premature babies, emergencies that must be so hard! How long can one do that?

Our doctor is trying to find at least one positive thing per day; I’m still producing milk that we keep on bringing to the hospital. The release is postponed again and again, we are becoming nervous, in desperation I contact homeopaths, a fortune-teller, but the relief and hope never comes. I've been singing to Juliet all the songs I know and I do know many songs. The psychologist we have requested is rather a burden and I realize the paradox. A department that in extreme, life-threatening cases works perfectly is absolutely not prepared to communicate with the families and help them in their worst crisis. There’s no psychologist that would talk to you, there’s no doctor to prescribe a sleeping pill for your insomnia as you cannot sleep for a week. There’s no priest to baptize, confess or to give the last rites for the departing souls and comfort the bereaved.

We receive the worst news in a simple sentence followed by a request to donate our daughter’s heart for transplantation. Her brain is irretrievably damaged; for ethical reasons she won’t be connected to an artificial kidney again. How long can a body without kidney work? We agree with the transplant without hesitation and there’s nothing left but waiting. The heart of our 6-month old chubby girl weighing 8 kilos is strong and it keeps beating for another 8 days. Days during which I am begging the doctors to let her go and if our state allowed euthanasia I am sure I would use my right to it. I am holding our baby in my arms, baby born out of love that was with us for a short period of seven months bringing only joy and happiness to us and to her baby brother. Juliet went on her last journey, a journey nobody comes back from.

After the funeral, we planted a small tree in Arboretum for you, Juliet, a cedar. This year me and your dad, brother and little sister have checked it and it is growing nicely, bearing a little tag with your name on it.

This year you would have got your first school bag for your sixth birthday and went to school. You would have blown out your six candles and wished your most secret wishes to come true. I'm sending you a kiss to heaven, my Juliet. And so are the mom and dad of the baby that has your strong, beating heart.

Your mom