Caregivers' Guide: Section 4

I had always wanted a baby girl, and I had a closet full of beautiful baby cloths: pink rompers and dresses with lace. Rachel couldn’t wear clothes for almost a year, and I had a very hard time getting rid of the things I had saved for my “dream baby.” Eventually I did it, though, when a friend who had been infertile for years had a healthy baby girl, and my joy for her overcame my sense of loss. The experts recognize that parents of children with ichthyosis hurt more than the children themselves. The hurt you may be feeling now is undeniable, and many parents before you have experienced it. Here are some tips from other experienced parents that may help you cope with your situation.


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