Evan was diagnosed with Harlequin ichthyosis two days before he was born, using 3&4D ultrasounds. We were told Evan was either a severe collodion baby or a mild Harlequin, but wouldn’t know for sure until he was born. He had an amazing team of doctors and nurses waiting for his delivery with the proper care. He received genetic testing after he was born even though it was almost certain that he had Harlequin. Evan spent 58 days in the NICU and came home 5 days before his actual due date.
It took a long time for my husband and I to ‘get the hang’ of caring for our baby with Harlequin ichthyosis. It was very overwhelming when he first came home dealing with his intense scaling and severely dry skin. Now, 22 months later, we have a strong routine and are keeping up with Evan’s scale removal and Aquaphor treatments. I am very fortunate that I am able to stay home and take care of my boy. Although we have an enormous amount of support and help from family, I feel the most comfortable being responsible for his skin care.
Evan will be turning two years old this June! He is a very happy boy and is starting to really blossom with his personality and playful toddler-like attitude. He is always smiling and giggling during Aquaphor applications and can’t get enough splashing in the bath. He has taught me so much in the 22 months he has been alive and my husband and I are very optimistic for his future.
We connected with FIRST as soon as Evan was born. It was such a relief to have a resource of information about ichthyosis. It took me a while to connect with other families, since I was so focused on Evan’s care, doctor appointments, and intense therapies. Thanks to FIRST and their facebook page, I have now connected with other families and am so glad that I did. I cannot wait to attend a family conference and spend a weekend with the FIRST community.
De De (Evan’s Mom)
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