Our daughter Maša was born with the mentioned chromosomal error. Today she is 20 months old. We learned about her condition in the 25th week of gestation. In such cases usually a standard protocol is performed. The doctors offer you a termination of pregnancy. Despite the horrible medical forecast and frightening statistics (e.g. short life expectancy – most of these children die before being born or in the first months of life -, numerous abnormalities, breathing problems, feeding problems etc.) this was not an option for us. It seemed like a nightmare just by reading how the procedure unfolds. An unlucky child gets a needle stabbed through the abdomen into its heart and a solution is injected into it. This injection causes death of the baby. I simply cannot understand it.
We decided to wait. If our baby girl should not live, we will say goodbye to her. But until she lives, we will love her. At the time I did not realise that this motto will prevail.
The time until the birth was the hardest part – a time of fear and insecurity. What helped me the most, were the words of my friend, who is by chance also a prenatal psychologist. She told me that despite this diagnosis, no one can tell me, how everything will unfold. Trisomy 18 has a wide range of conditions and outcomes and the stories differ. Thus, I began to look for positive stories for inspiration, I started hoping for a miracle and started imagining, how my girl would be born and surprise everyone, including doctors.
So it happened. She was born 3 kilograms heavy and 51 cm big. She breathed on her own and started breastfeeding. However, surprising the doctors was not going to be easy. I had a feeling that ever since they knew about the diagnosis , they worked according to the protocol. Despite Maša not needing any additional medical support, the offered us doctors on the fourth day after birth recommendations of the medical council regarding withdrawal of medical treatment, waiver of all surgeries, resuscitation etc. Again, probably impulsively, we decided, that if she is not dying, we will not waiver anything. She is not fine. She does not need anything of the mentioned above. If it comes this far, we will access her condition at the time and make a decision. Now she lives.
This pattern repeated several times. In these 20 months I heard countless times what is not in the interest of my child. What we should not do with such a child, what we do not give to her and what else does not come into consideration for her. The first person to encourage us, was a social worker in the Metelkova Health Center. She said that it was the same with the children who had Down Syndrome 20-30 years ago. These children were not medically treated. Thus, their life expectancy was short.
“You have to get the doctors on your side,” she said adding “and get them to fix her heart problem.” It took quite a while. The operation is out of consideration, they said. We do not perform operations on these children. They do not stand the intubation well, they have different tissues like we do …
Nevertheless, I continued to collect stories, medical research, and other statistical data. And our Maša continued to live, grow and develop; according to her own pace. Recently we reached a breakthrough. Her case was presented at the medical council. We received confirmation that she IS a candidate for the surgery.
Additionally, due to her pneumonia and breathing distress, she had to be admitted to the intensive care unit. This turned out to be a blessing. The doctor on call said the following: “Regardless of the diagnosis, we cannot look on as the child suffocates.” Our Maša withstood everything without a problem.
Hence, we live on and do not deal with forecasting the future and guessing how everything will turn out. We believe in our girl. I know that she is able to accomplish more as it seems. We love here immensely and we are learning that life is diverse and as such beautiful.
Tatiana Filimonova, a mother of Maša with trisomy 18.