"Newborns with trisomy 13 or 18 can benefit from heart surgery"

I just wanted to share an exciting medical journal article, which finally acknowledges that infants born with Trisomy 18 or 13 are more likely to survive if they undergo heart surgery.  

Note that this article was published in October 2017 - but I don't remember seeing it before now.  Since people are still doing searches and frequently ending up on this blog, I wanted to put this information here.

The article is here:  https://med.stanford.edu/news/all-news/2017/10/newborns-with-trisomy-13-or-18-benefit-from-heart-surgery.html

Researchers at Stanford and the University of Arkansas analyzed data from the largest study of its kind and found that infants born with these two genetic disorders have a significantly better chance of survival if they have heart surgery.  (Heart defects are very common in T-13 and T-18 babies.)

For us parents of these precious children, this is a real "DUH!!!" moment. But to be getting the medical community on board?  That is HUGE!  Those of you that know my Lilly's story know that we had to go all the way to Florida to get her heart surgery because local doctors, here in N.C., would not treat her.  They believed it was "unethical" since she was just going to die anyway.

This belief was common.  From the article:  

 “The thought has been that it doesn’t make sense to undertake a major heart surgery if the patient’s death within a few months is a near certainty,” said Thomas Collins, MD, clinical associate professor of pediatric cardiology at Stanford."

Instead of death being so certain, the researchers found this:

"The researchers found that heart surgery increased survival and hospital discharge on average from 33 percent to approximately 67 percent for these patients, and that this benefit lasted through two years of follow-up. “When we analyzed the survival curves, the data spoke for themselves,” Collins said. “Especially for trisomy 18, the number of babies that survive more than doubles after surgery.”

As one of Lilly's heart doctor's said before her first heart surgery, it was her hope that Trisomy 18 (and 13) babies would one day be treated just as Down Syndrome children were.  (Note that years ago, Down Syndrome children were NOT medically treated well either.  But it finally changed for them.)

Lilly sleeping after her 2nd heart surgery (Nov. 2011)

Lilly waving - on the way home after surgery & recovery!

Encouraging new T-18/T-13 medical journal article

"[Jesus] said to them, 'Whoever receives this child in My name receives Me, and whoever receives Me receives Him who sent Me; for the one who is least among all of you, this is the one who is great.'” - Luke 9:48

Earlier this week, the Trisomy 18 and 13 world was blessed by a positive medical journal article.  It was co-written by a Barbara Farlow, the mother of a baby girl who lived with Trisomy 13.

The University of Montreal issued a news release about the article (read it here) and I found it encouraging from the start:

"Children with trisomy 13 or 18, who are for the most part severely disabled and have a very short life expectancy, and their families lead a life that is happy and rewarding overall, contrary to the usually gloomy predictions made by the medical community at the time of diagnosis, according to a study of parents who are members of support groups published today in Pediatrics."

Lilly's above picture is a good representation of that.  I took her "famous smiling picture" as we waited in the hospital for a sleep study for her.  She was such a cheerful and contented little girl.  (She usually only seemed annoyed when she was hospitalized - and who could blame her for that?)  Lilly's above picture is part of a collage that Barbara made, of pictures of children from the Trisomy 18 and 13 community.  (Lilly's picture is in the 4th row down, in the upper right area.)

The abstract of the Journal article is here and the pdf of the article is here (a subscription is required to access the article itself). 

Keith Barrington, a neonatologist, clinical researcher, and chief of service at Sainte Justine University Health Center in Montréal wrote an excellent summary about the study.

As the mamma of a blessing that lived 17 months with Trisomy 18, I find these articles so encouraging.  I wish there was some way to reach EVERYONE in the medical community at once with this information.  I really hope and pray that I will have a chance to speak to some groups of doctors and or medical students at some point about this.  But in the meantime, I will continue to share Lilly's story with everyone, one person at a time.