Natalia was born with Down syndrome. Her mother shares her story and the message that living with genetic disorders teaches you the power of love that overcomes any complexity and makes you stronger.
Natalia’s parents, Blanca and Gustavo, received the diagnosis for Down syndrome at 10 weeks of gestation. At the first pregnancy ultrasound at eight weeks, a significant malformation of the embryo was detected. The malformation that corresponded to a cystic hygroma, meaning that a bag of fluid had formed under the skin in the epidermis. It was not even possible to see or hear the fetal heartbeat and could even affect some internal organs. At the time, the medical team even doubted about the living chances of the embryo due to this malformation.
The parents were told that there was a high possibility to confirm the chromosomal alteration type of Down or Turner syndrome through a biopsy, so a chorion biopsy was scheduled two weeks later. The experience was very hard because it was two weeks of uncertainty and a lot of stress, the fact of knowing that they were facing a diagnosis in case it lived, for life, and their concern about what it would finally be, one syndrome or another was devastating.
Every week or two until the sixth month of pregnancy, Natalia’s parents were doing tests until the cystic hydroma was resolved. At first all the uncertainty of the malformation about whether it could affect the lung, because there was pleural and pericardial effusion, whether it was going to be born healthy or not. And because the cystic hydroma could present a physical or skin malformation, all these doubts made the situation much worse. That made them carry a pregnancy with great concern and many moments of sadness and anxiety. Not just the Down syndrome that they already knew about, but the other things that could come along made affected them adversely. It was a prolonged impact until the birth, which afterwards was quite different.
As for the family support and the immediate environment until the diagnosis, at first it was kept in a very small committee, Blanca and Gustavo supported each other. They informed just the minimum necessary, to their other kids, to her parents and Gustavo’s closest family. It was after diagnosis that they began to open up to comment on what was coming.
Blanca and Gustavo do not see Natalia as an unhealthy individual. Instead, they see her with her peculiarities. It is true that some of her peculiarities coincide with some features of Down syndrome but her personality and the way she manifests it weighs much more. At the social level, Down syndrome is clearly visible, sometimes it has a positive influence, in case of greater tolerance even an overprotection is noticed, and some other times the opposite. Because when people see someone with Down syndrome, they do not usually give him the opportunity to do it all alone, they think “I do not understand beyond what you are saying”, the label weighs more, and the stereotype is that this person is not going to transmit anything to me more than they already know or will not be able to achieve anything by itself and that hurts a lot.
The message that Blanca sends to other parents in similar circumstances and her dream would be the same: “Keep seeing our daughter as a gift. In times of pain or suffering in times of adversity or uncertainty and exhaustion, consider that it is a gift because it teaches you to love beyond difficulties, difficulties that overwhelm us with sorrows, but they constantly remind us that this is love and how to live it, which is the most important thing in life at all times. I believe that this is the message that many parents share with me and perhaps other parents who do not have children with disabilities, also see in us; the ability to love unconditionally, the power of love that overcomes any complexity and makes you stronger and a better person”.
We wish to thank Blanca and Gustavo for sharing and trusting their story with us.
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