Many of you remember our interview with Barb Farlow, who lost her baby daughter Annie (above), who had Trisomy 13, after she was rushed to hospital in respiratory distress. Barb later read Annie's medical records and learned a "not for intubation" order had been written without consent.
This month Barb co-authors a fascinating article in Pediatrics -- the official journal of the American Academy of Pediatrics -- that address the ethics of offering heart surgery to the parents of a baby with Trisomy 18. Most children born with the condition die in the first year of life.
In An Infant with Trisomy 18 and a Ventricular Septal Defect, Barb and two North American neonatologists respond to questions about whether heart surgery should be offered and, after a surgery results in complications and the child can't be extubated, whether life support should be withdrawn over the objections of his parents.
The article concludes with these comments from Editor Dr. John Lantos:
Cases of trisomy 13 or 18 highlight an area of deep disagreement. Most parents would not want an infant with these conditions. Many of them are grateful for the prenatal diagnosis that allows them to terminate an affected pregnancy. Others choose a different course and either forego prenatal diagnosis, or, as in this case, use the information to make decisions about obstectric and neonatal care. Doctors are similarly deeply divided; some feels that aggressive treatment is futile and should not be offered, and others defer to parents. Drs. Okah and Janvier reflect this professional disagreement. Ms. Farlow speaks for the parents who come down on the side of treatment. These cases raise the most fundamental questions about the value of life, the meaning of personhood, and the limits of parental and professional authority. Deference to parents is generally the right course unless the infant is clearly suffering from ongoing treatment that is unlikely to be of benefit. The doctors in this case did the right thing: they worked to find common ground. As often happens, the infant surprised everybody.
Read the article and tell us what you think. Louise
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12 comments:
Louise,
Thank you for posting this disposition, but I cannot gain access to the article. I think, one needs a subscription?
Matt
My son has full T18 and is 9 months old. At 4 months, he had surgery for g-tube placement but could not be extubated due to severe tracheobronchial malasia. He was trached following the failed extubation and put on a ventilator. Twelve hours after his trach we had the biggest smiles I have ever seen, and they just wouldn't quit. He was thrilled to be breathing. He is an active, alert, loving baby, who happens to need a trach and ventilator to support his life.
He loves to smile at family members and is leery of strangers. Loves to look at books and dance to his favorite music. Still doesn't like cold stethoscopes.
I challenge anyone to spend 15 minutes with Aaron and claim he doesn't enjoy life and enrich those around him.
I have a beautiful 6 year old son living with full trisomy 18. I firmly believe these beautiful children should be treated like any other child would. The doctors told us our son would not live beyond 2 weeks, yet here he is being loved and giving love to his family, blessing us every day. There are many children with t-18 living happy lives, loved and treasured by their families. Doctors need to respect parents wishes of treatment and give these kids a chance.
Would love to read the article but don't have a subscriptiont to Pediatrics!
Oops! I didn't realize that I could access that because I was at Holland Bloorview and that access was restricted.
I've asked Barb if there is any other way to link to it and I will consult our librarian in the morning.
Thank you for sharing your stories Rebekah and Mary. I will get back on Thursday about access. Sorry! Louise
My daughter Joey has full Trisomy 18, is currently 21 months old and is the light and love of our lives!! She has 4 teeth and is cutting 6 more, yet is not too fussy at all. She loves to cuddle, watch TV, play with her Daddy, and get lots of Kisses from us!! She knows the difference between Mommy and Daddy, and also knows who her therapists are, she has different smiles for each of us!! Joey reaches out to touch faces, smiles when you talk to her, and loves to play with her feet!! I am insulted that anyone speak for me when it comes to my child.. I think a doctor saying that "Most parents would not want an infant with these conditions. Many of them are grateful for the prenatal diagnosis that allows them to terminate an affected pregnancy" does not have his facts straight!! I think the majority chose to carry to term whatever the outcome may be, and may of the parents who chose to terminate has very serious regrets once they have more accurate information!!
I stand firmly behind the position that SHE IS MY CHILD AND IF I AM WILLING TO HAVE HER UNDERGO TREATMENT OR SURGERY, THEN THE DOCTOR(S) SHOULD BE WILLING TOO!! I ONLY HAVE ONE CHILD, THEY HAVE MORE THAN ONE PATIENT!! WHO IS TAKING THE BIGGER RISK? I will not take my daughter to any doctor that only sees her as Trisomy 18, she is a child (my child) first and foremost, and she happens to have and extra #18 chromosome, but that is not a good enough reason to refuse treatment!! No one knows what the future holds, and if you withhold treatment, or encourage parents to terminate, you may be cheating families out of a life changing experience!!
Thanks for sharing this Louise. I look forward to reading the article.
I have not had the greatest experience with prenatal genetics. As you know, we were told prenatally our daughter would 'be a vegetable and drown in her own saliva' by the time she was two.
I have not been impressed by the process of decision making surrounding children with genetic conditions. I agree with the editor that doctors should defer to parents.
I do think his comment regarding termination is odd. I don't know any parents who were 'grateful' to terminate a wanted pregnancy. Heartbroken and conflicted over the loss of their child are better descriptors.
I am posting these comments by Barb Farlow, as she had trouble posting them. Thanks Barb, Louise
Thank you for posting this, Louise. I am immensely grateful to Dr. Lantos for the opportunity to offer the parents’ view.
Many years ago, I did a thorough search of the literature (journals and texts) related to trisomy 13 and 18. It was very revealing and insightful. There was almost nothing that would suggest that prolonging the lives of the children was a good thing. Photos typically depict a tragically malformed child who is almost always visibly suffering. Population studies reveal that the longevity for infants born with trisomy 13 and 18 has actually decreased since they were first identified as syndromes in the 1960’s.
The view that parents might obtain by searching online groups and connecting with parents is starkly different than the literature. The children living with these conditions are very happy and their families are enriched by their lives. The longevity of the children is uncertain and so the families live each day to its fullest. The ability for parents to gain a different view from what a doctor might offer of the quality of life for a child with trisomy 13 or 18 is relatively new and has occurred as a result of information and contacts obtained from the internet.
I guess it is always the case that communication is the key. Every child is unique. Some have no chance and live a short time and others live happily for many years with little intervention. My hope is that with time, providers will gain a better understanding of the hopes and views of some parents. Articles like this that give insight into the conflict and manner of resolution are the best first step toward that goal.
Video of child with full trisomy 18
http://www.youtube.com/watch?v=cteTcuI-xYI
Video of child with full trisomy 13
http://www.youtube.com/watch?v=Q6AOiZCnYnk
Hi all -- I'm not able to get broad access to the article without paying for it. Barb will be in touch with Dr. Lantos to see if there is any other route we can explore. Sorry about that!
You know, respected journals often make one or more articles free full access for some specific period of time. Given the interest in this one, maybe it can be suggested that they do that.
Hi -- I did ask if there was any way we could gain access to it. The only option given was to pay for it. I was told that the authors can post it on a university website, but with access restricted to the university -- not public access. It's unfortunate!
I feel the same as you do. My daughter has trisomy 13 translocation and honestly, its like once that diagnosis os places, the doctors start to care less about treating them. When my daughter was born i was told she is incompatible to life and that she might not live to even be one month. Well my daughter is 15 months and I sti have to fight just to get her examined for certain things. Its stressful. They do not treat them like a normal child. The saddest thing is if she gets symptoms of something, the first thing the doctors say is "its part of her condition" then after fighting to be throughly checked, you find out its something that can be fixed or treatable. Im so tired of fighting with doctors, but I love my daughter dearly and I refuse to be defeated when they refuse treatment or refuse to do anything. I will not sit and watch her pass away because someone refuse to help her. It honestly should be something done about doctors treating children with genetic disorders this way.
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