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Perinatal Care: Pregnancy with a Terminally Ill Child

Perinatal Care: Pregnancy with a Terminally Ill Child

When I was carrying little Lucy I did not know of her diagnosis. I clung onto hope that she would be a healthy child. But one of the marks of that pregnancy- more than any of my other pregnancies- was the bond I felt with her throughout the pregnancy.

During those 9 months I experienced some wonderful times- important to me personally, but the sense that she too was experiencing them with me was profound. I “took” her hill climbing, to the ballet, on holiday‚Ķ. and although she was in the womb, I felt she had experienced these moments with me. I felt she experienced the wonder of Swan Lake, and the beauty of the Isle of Skye- that she lived them through me, and in me.

ARC syndrome baby

Since then I have discovered the concept of perinatal hospice. The idea that the womb is a hospice for the terminally ill baby. And you intentionally create memories with the unborn child- doing things with the child, that the child will never live to experience themselves. Intentional care and support through the prenatal period in which parents know their baby will not live long, has been shown to greatly help the healing process, and reduce the number of women who terminate such pregnancies- studies have shown an increase from 20% to 75% continuing such pregnancies to term.

Although this concept was unknown to me, and Lucy’s diagnosis not known until the end of the pregnancy; the experience of her pregnancy was one of God’s grace. No matter how short a life is- every life counts.

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