A vívida experiência pela oportunidade da vida

A vídeo abaixo (em inglês) mostra de uma forma bastante vívida as emoções que envolvem a descoberta de um filho com síndrome de Patau.

Transcrevo (e traduzo) uma frase da mãe que me chamou a atenção:

Eu estou com medo de dizer adeus, mas eu não consigo imaginar como seria se não tivesse essa oportunidade, de conhecê-lo e… Amá-lo.

Clique aqui para vê-lo no Facebook com legendas em português.

Semelhantemente, a oportunidade que Deus nos deu de viver com Nina em casa nos trouxe muitas lições, além de uma alegria indescritível. Foi um presente de Deus tê-la em casa conosco, conhecê-la e amá-la.

The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

Annie Janvier, MD, PhD, Barbara Farlow, BEng, MBA, and Benjamin S. Wilfond, MD
Key Words
trisomy 13, trisomy 18, life-sustaining interventions, quality
Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers. After a diagnosis, parents may turn to support groups for additional information.
We surveyed parents of children with T13-18 who belong to support groups to describe their experiences and perspectives.
A total of 503 invitations to participate were sent and 332 questionnaires were completed (87% response rate based on site visits, 67% on invitations sent) by parents about 272 children. Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). They were also told by some providers that their child might have a short meaningful life (60%), however. Thirty percent of parents requested “full” intervention as a plan of treatment. Seventynine of these children with full T13-18 are still living, with a median age of 4 years. Half reported that taking care of a disabled child is/was harder than they expected. Despite their severe disabilities, 97% of parents described their child as a happy child. Parents reported these children enriched their family and their couple irrespective of the length of their lives.
What’s known on this subject
Trisomy 13 and 18 are conditions with 1-year survival rates of less than 10% and have traditionally been treated with palliative care. There are increasing reports of ethical dilemmas caused by parental requests for clinical interventions.
What this study adds
Parents who belong to social networks report an enriching family experience and describe surviving children as happy. Many of these parents describe challenging encounters with health care providers.

Parents of Severely Disabled Kids Say They Enrich Their Lives

By Jenifer Goodwin
HealthDay Reporter
Filed Under: Birth Defects / Misc. | Child Development | Computers, Internet / Misc. | Family | Genetic Disorders | Grief | Infant, Child Care | Parenting | Support Groups
Posted: Monday, July 23, 2012, 10:42 AM
MONDAY, July 23 (HealthDay News) — When Vanessa Hernandez’s sixth child was born, she knew right away her daughter was different.
Hernandez’s pediatrician wept as she told her the diagnosis. The baby had trisomy 13, a devastating chromosomal abnormality. Most children die before their first birthday and have serious mental and physical disabilities, including heart and breathing problems.
Hernandez’s daughter, now 19 months old, hasn’t had an easy time. She’s had seizures, has a tracheotomy to assist her with breathing and has been fed mostly through a feeding tube.
Despite the hurdles, Isabel is a source of great joy to her family, Hernandez said. Isabel smiles and laughs frequently, and there are no indications she is in pain. Her parents celebrate small achievements. Isabel’s five siblings love her fiercely. “She gets the most love in the house. They are very protective of her. Nobody leaves the room without giving her a hug and a kiss,” Hernandez said.
Though many people believe that raising child with severe birth defects would be more than they could bear, many parents of children with severe disabilities say that couldn’t be further from the truth.
In a new study, nearly all — 97 percent — of 332 parents of children with trisomy 13 or trisomy 18, another chromosomal abnormality that can cause similarly severe problems and shortened lifespans, described their child as “happy.” Parents also said that no matter how short their lives, their child enriched their family.
“Despite the fact that often these children live less than a year and they are disabled, families find they are happy children. They find joy in their children. They enrich the family, enrich the couple and the child’s life had meaning,” said study author Dr. Annie Janvier, an associate professor of pediatrics and clinical ethics at University of Montreal. “None of the parents said they regretted not terminating the pregnancy. None said the life was unworthy of living. All of the parents reported the quality of life of their child was a good quality of life.”