Baby with HPE to be born soon
Looking for encouragement as I am now approaching 37 weeks. Baby has semi-lobar holoprosencephaly, but is looking great. She has microcephaly which is normal for babies with this diagnosis.
When we were initially told, we were told this is incompatible with life, and she may not even make it to birth. She is still healthy from inside the womb and doctors now have more hope for her.
We are not naive. We know that if she survives birth and childhood it will not be easy. She will have epilepsy, cerebral palsy, and be non verbal as well as many other issues. These babies cannot control their own hormones generally, so she will likely need many medications to help her control her normal body functions such as body temp for example.
However. Many of the babies with HPE tend to have a long list of organ issues, facial deformities and other problems they can detect. Our fetal MRI showed every body part is completely normal and healthy, and her face is normal as well with no deformities.
This is why doctors think her case may be a more positive one for her to actually come home from the NICU and live for some time and maybe even years of childhood. I am so hopeful she will be one of the rare cases I have been reading about where the babies are essentially growing and progressing normally and not sick or in pain all of the time.
Either way we are getting close to delivery and I am so nervous. Nervous for what the future will bring. Nervous for my 9 year old daughter who will have to adjust with me and my husband to a major life change and sacrifice. Nervous to spend a minimum of a month in the NICU and try to keep home life as normal as possible as well. I am especially disturbed that our hospital has a flu restriction and they won't let my daughter meet her sister until she's out of the NICU....she's been through hell and back with us for three years now and multiple losses and deserves to meet her baby sister. 😭