JULINKA'S STORY
Through the eyes of mother Petra
The older I get, the more often I realize that everyone carries their cross, and the death of a child is one of the hardest. Those who have not experienced it can never fully understand the pain, helplessness and emptiness felt by a parent who cannot help their child. In this regard, we are all alone in our suffering.
Our story had a quick ending, and yet every moment seemed like an eternity. From the children's emergency in the Bulovka Hospital in Prague, we were sent home twice with our six-month-old girl. The next day, we couldn't let it go, and the wheels of the examination were set in motion with an immediate transfer to the pediatric intensive care unit. Pneumococcal infection was confirmed. And here came the wait. Waiting in a closed ward, where frames with photos of children and others thanking doctors for their dedication hang in the corridor. There was a huge desire for our frame to hang between them. Spasmodic hugs with my husband and tears. Nevertheless, we still had hope and believed in a miracle. But that didn't happen. Julinka was connected to extracorporeal circulation, we were waiting for a brain examination. We learn the worst truth in one sentence: "The brain is irreversibly damaged, for ethical reasons your daughter will no longer be connected to an artificial kidney." And completely disarming, was the question of whether we agreed to use our baby's heart for transplantation.
You are sitting in an uncomfortable room, with a thousand questions in your head, you feel that the world has stopped, but there is no one to talk to or be silent about it with except your partner.
The department, which works flawlessly in tense, life-threatening cases, is absolutely not prepared for communication on how to help family members who are often in a critical situation, in which they find themselves suddenly, finding their way around with difficulty. There is no psychologist to talk to you. There is no doctor to discuss possible diagnosis options with you and to prescribe you a sleeping pill because you cannot close your eyes. There is no priest to baptize, confess or give the last anointing to departing souls and encourage the survivors. We asked for a psychologist, and friends got a priest, but none of them were prepared for the subject of a child's death.
We agreed to the transplant without hesitation and waited 9 long days. You go to a ward where you can't stay overnight and you're worried that your child will be left alone when their time comes. You dread every phone ring. And finally, you wish your child could leave in peace, you don't want to see them suffer.
Memories and photos will remain from a short period of seven months, when Julinka only made us and her brother happy. No one else decides how you manage, what you are entitled to, or what is your duty.
For me, the House for Juliet project brings hope.
Hope for those who find themselves in a similar situation as us or who care for a long time and need to rest for a while. I imagine how different it would be to have the opportunity to spend those last few days in a facility that would provide the necessary equipment, as well as the facilities for us as a family. Not only for us parents, but and siblings, aunts and grandparents. I imagine how much easier it would have been back then.
And there will come a time after the death of the child. Apparent banalities that, as a parent, you don't want to explain even to those closest to you, let alone deal with the authorities. From then on, there will be a social worker in the children's hospice who will help fill in the paperwork, pick up the death certificate or inform the employer. A psychologist will discuss everything necessary with you, and the possibility of sharing a bitter fate with equally affected parents.
We can't take the burden off you, but we can make it easier for you at the given moment. I believe that by sharing our story, I will contribute to opening doors that are so difficult to talk about openly.
Mother Petera