One of the MoMs on my multiples board got some pretty horrific news. Her five month old twin daughters are incredibly sick. A few nights back, her husband noticed that one of the girls, Sydney wasn't breathing. He did CPR on her and got her to the ER- she was blue. They were able to revive Sydney and told the family at first that she probably just had severe apnea and would need CPAP or something to that effect. Some how it comes up that the girls aren't reaching for things, aren't holding their heads up well... and the Docs decide there may be something else going on. Lots of blood work later, they found this Werdnig- Hoffman disease.
This is how Brook told us:
Both girls have been diagnosed with Werdnig-Hoffman disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.
They have the most severe form. Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up b/c their muscles just can't take it. They might never talk b/c they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own.
Jake and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point.
Our friends have pretty much 'circled the wagons' for us to help us take care of all of the logistical stuff in our lives so we can just be with the girls and enjoy our time with them. We're going to celebrate every moment we have with them. We have decided to not do anything to treat the scoliosis and other issues that they have b/c we don't want to put them through that. I'm not even sure how far we want to take physical therapy at this point b/c we want all of their energy going to breathing.
We are looking into family counseling just to help us deal with all of the millions of thoughts swirling in our heads. Jake is doing really well considering (thanks Lexapro!), I have been a hot mess since we were told. I walked out to the car this morning and just started bawling b/c there was such a beautiful blue sky and my girls won't get enough blue skies.
They are asking us to keep them away from too many people b/c even the slightest cold can do major damage to their lungs. It makes me so sad that they can't enjoy their cousins, they won't know what it's like to walk or swim or taste candy, there won't be huge cell phone bills and driving lessons and wedding plans.
Ok, I think that's all I can write for now...I need to compose myself. Thank you all so much for thinking of our family; your friendship has helped so much during all of this!
Brook
*Her babies - both her babies - are going to die before they reach their first birthday potentially in the next three months. We are taking up a collection to help with the financial side of things. There is a paypal account set up for them. If you click on the pink DONATE box (at the top of this post), it should direct you to the account we've set up for them. Please don't feel obligated to donate, but if you can it's greatly appreciated. The money will go toward a photography session with the family, paying their medical bills and to a charity aimed toward children with similar diagnosis.*
What if it were Emma and Mady? What if it were my babies that would never be able to smile? It's a heartbreaking story and my heart goes out to them and their family.
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