"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!

Lilly's Christmas and the Warrior MAMA IEP Binder

Hi everyone!  I know it's been SO LONG since I've posted.  I actually still think of all sorts of things I'd like to write about but we've been dealing with some intense life "roller coasters" within our family for the past few years and I've had to let some things go, even things I love, like blogging.

Since I like having things about Lilly recorded (for my own record), so I wanted to post what I got her for Christmas last year.  I always buy her an angel themed ornament for her tree.  This one is little vintage angel poodle:

:

Ever since Lilly died, I've put a little red-white-blue Christmas tree at her grave.  However, they just do not hold up well.  So this year I did something different.  I found this adorable deer statute online (from Design Toscano - which is a company that has good quality items) and I tied on a cute bow and some garland:

I think it's adorable!  Hunter pointed out that the deer came already named - "Darby."  He thinks that name is ridiculously silly but we decided to keep it.  I like it.  :)

What finally pushed me to take the time to post today is that I wanted to share about the "Warrior MAMA IEP Binder."

During Lilly's life, I kept a detailed medical binder with all her information.  (I did a short post here about it.)  This huge binder was incredibly helpful, time and time again.  I always had the info I needed right there while at doctor's appointments or at hospital visits.  Medication lists, all her doctors info, notes from her physical therapy and occupational therapy sessions, diet information, printed pertinent emails from case workers, etc.

I remember at a couple of Lilly's hospital stays, the nurses commented on just how helpful my binder was and they wished more parents would keep them.  At one emergency room visit I was just sort of frozen in horror and was having trouble processing.  I handed the doctor and nurse my binder and they quickly got all the info they needed from it and thanked me.

I can not emphasize enough how important it is to have a notebook like this when you have children with any kind of special needs.  

Now I LOVE making notebooks to organize papers in and felt I had everything I needed in mine.  But what if you aren't naturally organized and just aren't into that sort of thing?  What if you're unsure of what all to put in it?  Well you can now buy one that is already put together and full of helpful, guided pages.

NOTE:  I am not affiliated with this product in any way.  I just wanted to share about it because I know how helpful this type of binder is, when you have special needs children.

Lisa, of Organize365.com, is the mother of 2 adopted children with special needs and has dealt with everything that comes with that.  Doctors, special diets, different schools, therapies, etc.  She kept her own binders for her children.  Now she has created one that can be purchased.

If you go to https://organize365.com/WARRIOR-MAMA/  you will see links for information on the binder:

- a podcast

- a free online masterclass

- an unboxing video

- link to purchase the binder

Finally, just for fun, take a peek at the Organize 365's homepage - if you scroll down you'll see a picture of Tabby and I along with an email I sent Lisa.  :)