"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!

More details about yesterday's emergency room visit

Weight check = 13 lbs. 2 oz.

Yesterday Lilly woke up early and sounded congested and her breathing wasn't quite normal. There was a little pause between breaths at times. I spent from 5:30 - 7:30 a.m. pounding on her back and chest and suctioning her nose and wiping mucous from her mouth. It helped some and she seemed to feel better when I did that. But off and on during the morning she made wheezing sounds.

So I tried a nebulizer treatment. That didn't seem to have any effect on her. Hooked her up to the pulse ox and her numbers were OK. Wondered if Lasix would help so I gave her some of that. Then I rubbed Lympha Rub on her chest and neck and sat with her in the bathroom with the shower on hot. Results weren't good enough.

By this time I was feeling almost sick from the constant knot in my stomach. The special "Uh oh what is happening with Lilly! knot." I called my husband to tell him I was taking Lilly to the emergency room. The breathing reminded me of the two times she had viruses, both of which just about killed her.

I packed for the hospital in record time and my son and I rushed with Lilly out the door. She was actually acting normal, but her breathing was still wrong. We headed to a hospital about 40 minutes from here. The one with the children's emergency room and best-PICU-to-stay-at if you have to stay.

Once we were in the emergency room I told them I wanted a chest x-ray done on her and an RSV test. (She's on Synagis, but just in case!) The RSV test came back negative, thank God. The x-ray showed some white spots. As I said in yesterday's post, the cardiologist on call said Lilly was in early heart failure and to re-start her Lasix.

Dr. S, the emergency room doctor (who knew my husband - how great to have a connection!) said we could leave or stay - whatever I was comfortable with. Lilly was smiling and carrying on (today's picture) so I said I would like to leave. That we have a pulse ox and oxygen at home. And that we'd be back if it got worse.

Today I heard from Lilly's regular cardiologist, Dr. R. He disagreed with the other cardiologist's conclusion. (I was amused that the cardiologist on call was "Dr. C" whom I mentioned here. I wonder if he was surprised again that Lilly is still alive.) Dr. R said that her heart is completely repaired and there is no reason for heart failure. He said viral pneumonia will give the same chest x-ray findings as heart failure, but that heart failure will not cause the wheezing and congestion. Lasix won't hurt, but it may not do much. And to please take her back to the ER if her breathing got worse.

I had Lilly on the pulse ox all last night. Her numbers weren't too bad and she slept all night long and until 1:00 today when I woke her up for physical therapy. She still seems a bit congested but her breathing is pretty normal. She seems to be feeling well. Her therapist thought she seemed even more like herself that she did last Friday.

I am glad that Lilly has a pulmonologist appointment tomorrow. Maybe we can get another x-ray or even an echo done to check on things.

Never a dull moment with Lilly!

"Cast your cares on the LORD and he will sustain you; he will never let the righteous fall." - Psalm 55:22

Heart catherization postponed

Photo credit Steve Rubin Photography

Lilly is still having some extra congestion so her cardiologist thought it best we postpone her heart cath. He is concerned about the additional risk since she will have to have anesthesia. The lab is supposed to call me back tomorrow with a new day and time.

I admit I'm disappointed because I just want to get all this heart stuff done asap before she gets really sick from something. But I certainly don't want to take any chances. I keep thinking about the little boy Caleb, who I mentioned in my last post, who has since had several more heart attacks. So perhaps God allowing Lilly to have this cold right now prevented something worse from happening.

"I waited patiently for the LORD; he turned to me and heard my cry." - Psalm 40:1

Lilly had occupational therapy yesterday. The therapist commented several times that Lilly is such a hard worker and doesn't whine like some of the other children she works with. As she moved Lilly through different positions, she noted how much stronger she has gotten, just in the past few weeks she has worked with her. She said Lilly's body wants to crawl and roll over. But that she can't because she doesn't have the neck strength to pick up her head.

On a completely different note, Lilly experienced her first earthquake yesterday! Only the disappointing thing is - I didn't even notice and I doubt she did either. At the time of it we were sitting at the kitchen table and I was giving her a nebulizer treatment. The machine is very loud and vibrates the table. Plus Lilly was MAD about the treatment and was crying and squirming about. I was so focused on her I didn't notice anything unusual.

Visit to the eye doctor

This past Friday Lilly had her first visit at the eye doctor. A genetic pediatrician she saw months ago thought she might have a cataract. Thankfully Lilly does not have cataracts. In fact, her eyes are very healthy. (She made the eye doctor work really hard to check her eyes. The doctor said she was sweating by the end of Lilly's appointment!)

Lilly's eyes still "bounce" though not as much as they used too. Both eyes don't always work together. She does not track things well at all. In fact, the eye doctor could only get her to track an object that had a light on it. She didn't focus on any of the other brightly colored objects the doctor held up for her. The doctor thinks this is probably just a developmental delay.

It is not always easy for Lilly to make eye contact with us. But when she does, she is able to hold contact for up to about 2 feet distance. That is improvement though, so Lord willing she'll just keep getting better in this.

She'll go back for another eye check in 6 months.

I asked if Lilly's eye color was still changing and the doctor said it was done. Lilly's eyes have turned from a dark blue to an almost olive shade of green.

My husband talked to the cardiologist nurse in Florida on Friday and she said that hopefully, we will have an answer about whether or not they will agree to do Lilly's heart surgery (VSD repair) by the end of this week. The cardiologist team need to discuss her case and then she'll be discussed at their meeting with the surgeon.

"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him . . ." - 1 Corinthians 2:9

Lilly has already had two parties to celebrate her first birthday, which is tomorrow, July 4. I'll blog on these asap!

The 2nd opinion

Earlier this week Lilly had her first bite of pureed sweet potato. This video shows that first bite as she considers it. She has eaten sweet potato again and seems to definitely prefer it over banana. But it closely ties avocado.

We heard back from the surgeon in Charleston, S.C. whom we recently contacted to get a second opinion from about Lilly's heart problems. (VSD and left ventricular hypertrophy.) He reviewed Lilly's records and latest echo with several cardiologists. They concluded that they could not see any reason not to close the VSD. But they want a complete echo done at their office.

What wonderful news! It made me so hopeful!

Lilly woke up at 4-something this morning sounding a bit congested. I cleaned her nose out. She didn't want to get back in her bed so we had some snuggle time. It was such a blessing and well worth missing an hour of sleep.

Lilly didn't have too good a day though. She wanted to be held a lot so I knew she wasn't feeling too good. She spit up thick mucous several times today and I have been busy keeping her nose cleaned out. She seems a bit better this evening though and is very vocal right now.

I haven't put oxygen on her at night for the last couple nights. The oxygen thing has been a toss up. It is supposed to help Lilly sleep more comfortably, etc. But so far, it has only upset her and she doesn't sleep very well with it nor keep the cannula on all night. (That being said I plan to put it on her tonight since she has had more trouble keeping her oxygen levels up today.) I'm wondering if that might change once the NG tube is out of her nose.

Whew ... what a roller coaster ride the Trisomy 18 life is!

"Let the peace that comes from Christ rule in your hearts." - Colossians 3:15