Constanza Saavedra spends 24 hours a day devoted to her son Ignacio, or “Nachito” as she affectionately calls him. He’s only seven years-old and suffers from a serious congenital muscular condition that prevents him from breathing on his own. He depends on a respirator to survive.
When he was born on August 17, 2008 in Santiago, Chile, the midwives advised the family not to get emotionally attached to him because he would probably die within a few hours. Surprisingly, it didn’t happen.
Ignacio’s health is so delicate that his mother hardly ever leaves the house for fear of infecting him with some kind of virus or bacteria. She is with him all the time.
Moreover, the cost of his care has become so high that this family has had to sell the little they had to survive and have had to move in with their parents. She and her husband Gonzalo Opazo have now dedicated their lives to care for their only child.
For many, it’s a devastating story – but for Saavedra, her son is the best thing that ever happened in her life and is the reason for her joy.
“I am humbled to say I’m happy. I feel completely fulfilled. For me it’s an honor that such a marvelous child should be my son,” she said in an interview with ACI Prensa.
Due to his condition, Ignacio can’t move most of his muscles and has to communicate through simple sounds. Consequently, he has daily physical therapy sessions to work on his motor skills and breathing as well as two days with a speech therapist.
He spends most of his time in bed. His pastimes are reading and watching television, but without a doubt his favorite is playing with his mother.
“For sure it’s a very serious muscular condition, and true, he cannot breathe without a respirator that breathes for him, but anybody who knows him realizes how immensely happy he is,” she said.
“He is very intelligent, knows how to read, and communicates extremely well. We spend the whole day playing, learning, singing, reading, doing entertaining things…and he knows that his little head has no limits,” Saavedra said of her son.
This mother is also a family doctor, but she could not continue practicing her profession at any medical facility after “Nachito” was born. However, as she says, this has been “the most important and beautiful medical challenge that I have been able to experience. In no way do I feel frustrated. I’ve learned a lot and I also have been able to help others.”
Saavedra said that as a family “we have everything that matters to us. We’re not lacking anything important. We enjoy our days and we want to continue this adventure with our son.”
“For me it was never an option to abort Nachito. If I had known just how much I would be losing, it would have been the biggest mistake in the world,” she said.
Saavedra noted, however, that many women in her country lack the support to make the same decision for their children.
“There’s a problem…and we can’t cover it up,” she said. “Without support there are mothers and families nowadays that are shouldering a large percentage of the expense of having a child with a chronic illness. It happened to me and it’s happening to a lot of other mothers a lot worse than for me.”
“You can’t put a price on the life of a child. And a family shouldn’t have to be out on the street because they put the well being and health of their child ahead of everything else,” she added.
“So the government has to take the responsibility to guarantee all possible available support for these women, their children and their families.”
Saavedra also runs the Facebook page “Testimonies for Life” that gathers together real life stories of mothers that have gone through an at-risk pregnancy such as she did, women who have decided to go forward with courage and resolve.
“Every human life inherently has dignity,” she reflected. “Because what defines dignity? Health? If that’s the way it is then a high percentage of society would have lives without dignity.”
“All the old people, all the people dependent on others, the little children, sick people, poor people. So who defines what dignity is? Another thing is quality of life. For me quality of life doesn’t consist in what you can or can’t do,” Saavedra said.
“Rather, it’s about how much you enjoy your life, and how much you look forward to wake up the next day and go on living, and my son clearly enjoys his life.”