Where to Turn for Support with the Loss of a Child

Alveolar capillary dysplasia, or ACD, is an extremely rare disease. In fact, there are less than 200 cases discussed in medical literature.

It’s caused by a genetic mutation in the FOXF1 gene. When this particular gene is damaged, it doesn’t create the proper protein needed to help a fetus develop lung blood capillaries. The end result, sadly, is the baby doesn’t survive for very long after birth. There are no effective treatments for ACD, and what causes the FOXF1 gene to mutate is unknown.

ACD is suspected when an infant has severe hypoxemia and high pulmonary blood pressure that is resistant to treatment. The diagnosis is confirmed by an examination of lung tissue by a pathologist, and a lack of capillaries near the alveoli.

I don’t believe there is anything more traumatic or painful than losing a child.

It’s a hurt that never completely heals, and many families suffer in silence because they don’t know where to turn for support. Well-meaning friends and family, who have not experienced such a loss, really don’t know what to say, or how to console grieving parents. And sometimes, their uninformed perspective only adds to the hurt.

So, the following list contains the names and contact information for various organizations who can help people manage their grief.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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