Skip to content

Still in TO Limbo: April 11, 2012

April 12, 2012

These days at the hospital are looong and horrible. First we met with Dr Cox, who is one of the doctors from the critical care unit, where little man will be after he is born. That was hard. He was great, but very real. We talked about indications for the discontinuation of life support and the process involved if he doesn’t make it, it made it all very very real. After that we talked about much better case scenarios, and he told us about two former CDH patients who are now both teenagers that had visited him this month. We toured the CCU/PICU and saw the room little man will be in. He can have 2 visitors at a time, no kids, so Poppy will have to wait until he’s a little better to meet her new baby. Dr Cox told us that they always prefer to ventilate them nasally rather than orally which made me so so happy, it seems so much less traumatic and helps with oral aversion issues! He’ll be allowed blankies and lovies but no clothes. He laughed that he never registers that they’re all half naked.

As far as the surgery goes, we also talked about the Tracheal Occlusion surgery with Dr Cox and he said he would 1000% not do it. He said the risks were too high and that it is still experimental. He was pretty conclusive about it.

Dr Langer echoed his sentiments. He said there have not been enough procedures performed here for them to qualify for the international trial, which means everyone is still learning and that it hasn’t been proven beneficial enough in scientific terms for his standards, so with our slightly better odds it’s not worth the risk. He explained that while it works really well in animal trials, those hernias had been surgically created. As they don’t know what causes CDH they can’t be sure that the animals normally developing lungs are representative of human CDH babies lungs.

Later we met with an OB who wasn’t Dr Ryan but is his colleague. He was all for the surgery, and talked about all of the benefits, but admitted that if it was his child he would have a hard time going ahead with it. Of the 4 surgeries done in Toronto, all had delivered earlier than 40 weeks, but none so early that it killed them. 3 of the babies died, but all were initially given a 25% chance of making it so it’s not an unexpected outcome. However, it’s not like the TO was some miracle that made all the babies live, which is what we really want.

This was all really hard for me to hear. I sort of feel like if we lose him to the TO surgery, we’ll have lost him fighting for him, but if we don’t try and we lose him we’ll always wonder “what if”. Hubby argued that if we lost him because of TO we’d always wonder “what if we had just let him try without it”. It is a really tough decision. We thought we’d end the day being told whether or not we could do it, but it turned out we are the ones who are supposed to decide. Which sucks.

We also met with Michael Marshall, the minister who married us and another good friends dad. He’s a chaplain at Sick Kids and has lots of experience with parents like us. He said I’m allowed to be mad at God, which is good, because I am. He also said the rules got changed and unbaptized babies don’t go to limbo anymore. Which is good. But he’ll baptize him for us in the hospital anyway!

In the atrium we ran in to my teacher’s college roommate Alison. Hubby remembers her from the time she took a sip of tea but it was too hot. She wanted it out of her mouth so she swallowed it. 3rd degree throat burns ensued… She was studying to be a respiratory therapist back then, and now she’s a head RT in the CCU, so she’ll be taking care of little man! She really is actually smart. Crazy how small the world is. She said she knew she’d see someone she knew one day but that in 3 years she hadn’t yet. A dubious honor for us, but still nice to have people we know fighting alongside us. Especially lovely, hilarious ones like Ali.


From → Uncategorized

  1. Leah marshall permalink

    We love you. Thank u for taking the time to fill us in. You have every person that knows and adores u on your side and ready to fight with and for you always and forever. L

  2. Beth Litowitz permalink

    Alex, It is so hard to even begin to imagine what you and Tim are going through but not a doubt in my mind believes you are both amazing strong people who I am proud to know. Sending love and positivity to you each and every day and know that love and energy have power. Little man is lucky to have you both as parents. Love you so much.,

  3. We flew to UCSF from Portland, since they have a premier Fetal surgery program and see hundreds of cases of CDH a year, as opposed to 15 here in Portland. Finley’s LHR was about a 1.0. I wanted to make sure we did everything we could to give her the best chance at life. After a whole day of tests we met with Dr Lee and he said she was not a candidate for TO, like you wrote – they really only try it on the babies with a worse chance of survival since they are still loosing so many of these babies from the surgery.

    We were told the reason why they don’t really use LHR anymore for left sided cases is that it is not predictive of outcome. The pulmonary hypertension is the wild card, and you don’t know how bad they will have that until they are born. Finley’s started out mild, but then her PDA closing made it worse.. and then miraculously, she improved. It was a crazy first 19 days – but she was strong enough for surgery by day 19 of life. Today she is 20 months old and is a totally healthy, right on track developmentally, no meds toddler. We went home after 49 days in the NICU just on prilosec for reflux, which she stopped about a month ago. Hold onto hope. There are so many amazing survival stories out there.

    I will be praying for you guys. If you have any questions – don’t hesitate to ask.


  4. Susn Kwolek permalink

    Alex: Thank you for sharing your stories. I am thinking about you and Tim and Poppy and praying for a miracle for your little man
    Susan Kwolek (Erin’s Mom)

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: