February 29th is Rare Disease Day.
It is also the day Miranda would have been 5 months old.
Some of you may know but others may not, when Miranda did not respond to the known treatments for PPHN (Persistent Pulmonary Hypertension of the Newborn) and with the absence of any congenital anomalies they began to suspect that what she had was ACD (Alveolar Capillary Dysplasia). It is an extremely rare disease with only approximately 200 (yes, two HUNDRED) reported cases since the 1940s! It is so rare that there is so much unknown about it, it can not currently be diagnosed prenatally, it is only found when the lung tissue is biopsied. It is universally fatal, there is no cure or treatment at this time. It is thought that a lung transplant would offer hope, but no child with ACD has lived long enough to receive one, most children live less that one month.
We had 28 days.
We were blessed to have more that 24 hours.
Without the help of ECMO at Johns Hopkins we would have lost her before she was even a full day old.
While on ECMO the baby receives heparin to prevent clots that are prone to forming in the circuit. Because of the amount of heparin in her body the surgeons did not feel the potential result outweighed the risk to Miranda and did not recommend the biopsy, we also declined because the only thing a result of ACD would give us at that time was a reason to remove support and we weren’t ready for that yet (at the time it didn’t seem she was either). We were given another opportunity after she died for a biopsy and autopsy, but in my haste to get home I declined once again. My mind was no longer in the hospital, it was home with my other children and we needed to be there with them. There are parts of that decision that I wish I could take back, but I can’t and we must move forward.
So my point being, we do not have a confirmed diagnosis of ACD but all of her symptoms including the lack of anything abnormal during my pregnancy have striking similarities to many of the stories of the other precious babies lost to ACD. If you visit the ACD Association website you can read some of the other children’s stories.
Why am I supporting an organization that we don’t even have a diagnosis for?
I have hope that with more awareness and fundraising that more research will be done. I hope that someday parents won’t have to face the same impossible questions and decisions we did. It won’t be a matter of a biopsy, one more invasive and risky procedure, instead maybe with more research doctors will be able to determine a diagnosis by blood screen or a scope. Better yet, with more research maybe they will find a cure! Then the risk could also bring a glimmer of hope in the days the babies are here because there will be a treatment for them.
How can you help? What and I really getting at?
I’d love to help raise money towards the ACD fund that NORD uses to present grants for research. Gifts can be made through the website in Miranda’s name. Please be sure to designate your gift for Alveolar Capillary Dysplasia (ACD) in the research fund drop-down menu.
As a gift for your giving and as a way to say thank you I’d also love to give something away to one of you…
In January I joined a knit-along on Ravelry for a mystery shawl. Each week the designer sent out a clue that contained the next portion of the pattern and I knit not knowing what the pattern was called or what the final project would look like. This past weekend she released the final version of the pattern along with it’s name.
It means “Heavenly Flower”. The minute I saw that I knew I would be giving this special shawl away. You see not only was the title perfect, but I knit this with yarn I dyed in a color I didn’t sell in my shop because it was unrepeatable.
It is a gift I want to share, just as I’ve shared my precious Miranda with you.
If you are able to make a donation of any size (every little bit counts), either through the NORD site
or through the PayPal donate button here, please leave a comment here (even if you’ve never commented before!) and I will enter your name in the drawing for this shawl. I will draw a winner on February 29th and contact the winner for shipping information. (If the winner does not respond and provide an address to ship to within 48 hours I will draw a second name if and so on as necessary, so please watch your email box!)
If you are unable to make a donation you can still help me.
Please share this post however you can, post it on your Facebook wall, tweet the link on Twitter, Pin this post on Pinterest, email it to a friend.
The more people that know what ACD is the better. Let’s get doctors and scientists interested in preforming more research for it!
((While you’re here be sure to click on the button on the right margin as well, for each click Lundbeck is donating $1 to NORD for Rare Disease Day 2012.))
Thank you for helping us honor Miranda’s legacy.
Miranda Gloria Walters
September 29, 2011 – October 27, 2011