Preventative medicine

Friday, August 17, 2012

On Wednesday, we saw a pediatric hepatologist (liver specialist). This is the appointment that I have been pushing for, the one I kept asking the geneticist and pediatrician for a referral for but that they didn't give me. So, I got the appointment in an around about way. Courtney (my high school friend and doula) suggested that I visit the office of a pediatrician/consultant that she is friends with. This woman (who was wonderful, by the way) referred me to a patient relations person at Children's Hospital. The woman at Children's had me send Maxie's file for a physician to review there and then that physician referred us to two specialists – the SIDS specialist that we saw last week and the hepatologist that we saw yesterday. As you may or may not recall, we were told that the one very unusual finding in Maxie's autopsy report was that he had a “fatty liver”. That is what led us to do genetic testing – it was potentially an indication of an inherited fatty acid oxidation disorder. The geneticists did not find that Maxie had a fatty acid oxidation disorder, but they did find that he and Ted are both carriers of one. We brought Mo to the geneticist the week after he was born so that they could take a tissue sample to see if he is also a carrier. We are waiting for the results of that test. My feeling has been all along that we should see a liver specialist, who might be able to tell us how Mo's liver is doing and who might have additional views on what could have gone wrong with Maxie and provide further recommendations on preventative “treatment” for Mo.

It seems that the other doctors we have been working with are uncomfortable with my wanting to treat Mo preventatively for whatever his brother may have had. I am not sure why. This is how I see it – although most children will not die from sleeping on their tummies (most children of my generation were placed to sleep on our tummies afterall and we are still here), we are encouraged to put our children to sleep on their backs just in case they are one of the unlucky ones who cannot tolerate tummy sleeping. I have had the incredible misfortune of losing my firstborn child. A boy I loved more than life. I want to do everything in my power to ensure that I never have to live through that again and that (more importantly) that my Mo is ensured a very long and healthy life. I love him wildly. He is a blessing that I do not take for granted. He is delicious and beautiful and strong. The treatment of the disorder that Maxie and Teddy are carriers for is actually quite simple – the baby needs to eat every 3-4 hours (no sleeping through the night) and takes a supplement. It is a natural supplement, an amino acid that is naturally produced in all healthy people.  When Ted and I asked the pediatrician and the geneticist about giving Mo the supplement, they expressed the opinion that they aren't comfortable prescribing the supplement if the baby isn't sick. Now, I must point out – there are no negative side effects from taking the supplement. None. They just felt it wasn't necessary. When I have suggested it, I have been shut down almost immediately. I stopped suggesting it months ago.

I didn't have high hopes for our hepatologist meeting. And, I don't even know what constitutes high hopes anymore. But, I figured we'd go in there, he'd probably tell us about the back to sleep campaign, maybe tell us that we cannot know the condition of the liver without a biopsy and then we'd leave – knowing we'd gone to the appointment because we had to but that it would probably feel it was a waste of time. Imagine my surprise when HE suggested that we give Mo the supplement.  I didn't even bring it up, he did.  Imagine my surprise when he offered to look at the heart and liver slides that the coroner has from Maxie's autopsy. Imagine my surprise when he offered to coordinate getting the slides from the coroner's office without us having to make one more call or send one more email to them. He said that Maxie's liver was only mildly fatty (something I had only heard for the first time at this appointment) and that the story didn't make sense to him either (none of the doctors we have seen actually believe that Maxie had this genetic disorder. None of them can make sense of the story we've been given about Maxie's death.)   But, he said that he is a father too and that he wouldn't take any chances at all with his next child and that, since there is nothing harmful about administering the supplement, he saw no reason why we shouldn't do just that – preventatively. He offered to call our geneticist to explain why he felt it was an important precaution to take.  I received a phone call from the pediatrician and an email from the geneticist yesterday agreeing to prescribing the supplement.

All I can do is ALL I can do. I SO wish I had a life where I was just enjoying my new baby. As Ted says – I wish we could just be the kind of people who could go out and enjoy the day. That is not who we are – Ted has not given up that we might someday be those people again. Mo and Ted bring me joy but sometimes I fear I will never feel true happiness again. I fear that I will never be myself again. The best chance I have is in raising this boy – who I am watching sleep so sweetly as I write this post. My survival is dependent on his – so perhaps everything I do for him is entirely selfish. So be it. I died when Maxie died. Mo has given me a chance to be reborn and I am not going to throw away that opportunity.


jessica said...

"All you can do is all you can do". You are doing a lot and doing a great job. You are fighting for Maxie and you are fighting for Mo. You love your boys and you are going to do everything within your power and more for Mo. There is nothing selfish about that - that's just what you do. Finally a doctor who "gets" it! A doctor who is looking out for all of you. It's mind boggling that they haven't all been this way from the start. I'm glad you found him. I'm glad he's looking out for Mo and you. I hope that he can help make some sense of Maxie's slides and report. And bless him for at the very least trying. I too wish that you all had a life where you could just enjoy your new baby. It is so unfair and heartbreaking that you can't. I love all 4 of you very much. xo

Rachael said...

Finally a compassionate, sensible doctor. Congratulations on this wonderful achievement in pursuit of your goal to do all you can do!!!

Susan Ireland said...

Abby, I agree with you - as you know, I have done everything I can to ensure Madeleine doesn't face the same risks as her sister. I am ever vigilant. She must survive. However, you will achieve a life where you are enjoying your baby. This is early days - and whilst you may well continue to be ever-vigilant, I am anyway, I am hopeful that your anxiety will subside as mine has. Have you ever read Diana Doyles' blog. She drew my attention to this quote: Enjoy this moment. This moment is your life. I think you are doing that - as you watch little Mo sleeping and some joy has returned to your life. As time passes, and you work through these difficult meetings, life will become less difficult. Much love to you. I think you are doing great xx

greg said...

Amazing it's taken this long to find a doctor who seems to understand what you have been through. You have been the most incredible mother to Maxie and have done everything possible to find an answer and give his little brother every single chance he deserves to live a long and wonderful life. Maybe you will never be the same person you were before - I have no idea - but I know this seems to be one tiny step towards a bit more peace of mind.

Daph said...

Ad 120 in health and laughter. Shabbat shalom mo!!!

robyn said...

i am happy to hear that you have found a doctor who seems to really want to help you in the best way he can(and help maxie by maybe getting closer to what happened to your little angel). you were a fabulous mother to maxie and continue to be so in your fight. mo is a lucky little boy to have parents like you and ted and i hope with all my heart that you do in fact become "those people".

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