Once again the days between my blog posts have stretched out to weeks and now months. I remember when I first started this blog in 2013 I was in such agony, it felt almost blasphemous to include the word hope in the title. I didn’t know it at the time, but I was caught in the “this is how I will always feel” vortex that comes with profound grief. So much trauma from the past and fear for the future. It took a great leap of faith to tack on the “and Finding Hope” to “Losing Lucy” when I created this blog.
Now, as we head towards the end of 2022, I look around and realize I’m here, in the hope and the light that I was scared to even dream of in 2013. For the first time in a decade Josh and I aren’t gearing up for another stressful pregnancy. We are flipping the “Fight or Flight” switch and we are now in recovery mode.
I have weekly EMDR treatments and counseling sessions to work through the trauma of my four alloimmunized pregnancies. I finally feel like I’m emerging from the shadows of perinatal and postpartum depression, anxiety and OCD that took hold during my last pregnancy.
Our family is complete and our children are healthy and growing. Liam is 13, Asher is 11, both in middle school and handling it quite well, actually.
Lucy would be 9 if she were here. Her absence can be deafening some days. Nora is 7 and loving the first grade and gymnastics.
Callum is in pre-K and just turned 5. Our baby August is 2, not so much a baby anymore. My only blue eyed, dimpled boy.
The Allo Hope Foundation, which I started in 2019, is thriving and growing in ways I never could have imagined. Providers and patients have stepped up to help support our cause, generously giving back in order to protect families from this devastating disease. I’m hopeful that new, safer treatments are on the horizon. My gratitude literally has me in tears as I type this. The way the community has rallied around our patient community the past few years has surpassed all of my hopes, and there’s so much more to come. I remember how isolated I felt when I first received my diagnosis of red cell antibodies. I felt powerless to protect my baby, unable to make my own reproductive decisions, confused by this complex disease, dismissed because my condition was rare. But here in 2022, heading into 2023, I feel empowered, educated, and supported- the way I want every woman with maternal alloimmunization to feel.
On that note, I want to share some of my favorite resources we now have for patients, providers and loved ones dealing with maternal alloimmunization and HDFN over at the Allo Hope Foundation.
Letter to Providers
To help alleviate some of the burden on patients, we created this letter to providers that includes an overview of basic treatment protocols for alloimmunized pregnancies. This has been reviewed and signed by the AHF Staff and Medical Advisory Board. It has sources cited and QR codes that doctors can use to get quick access to more of our resources.
The Allo Podcast The Allo Podcast brings you into the complex world of maternal red blood cell alloimmunization and Hemolytic Disease of the Fetus and Newborn (HDFN.) We share real life patient experiences, valuable insights for providers and care teams, and easy to understand monitoring and treatment information. We empower you to advocate for the best possible care, and we have a great time doing it.
Free Prenatal and Newborn HDFN Patient Booklets for anyone who wants to order them. Some patients like to order a few; keeping one for themselves and giving the others to their care team.
Prenatal Decision Tree for patients and providers to use as a framework when creating their personalized care plans.
In Memory A place to honor your baby who died.
Antibodies in Pregnancy: An AHF Support Group Our support group of over 1,200 women with alloimmunization from around the world.