Because of this we've decided to provide "comfort care" if Allegra is born alive. This is a kinder, gentler term for palliative/hospice/end-of-life care. Although we could subject Allegra to multiple surgeries to fix her heart and lung and insert tubes connected to machines to provide basic bodily functions--we've chosen not to do this.
If Allegra is born alive, there will be no shots, no tubes, no scalpels, not even newborn eyedrops, and there will be no surgeries and no NICU. If she needs pain medication it will be given orally. If she needs help eating we'll use a dropper. If she needs help breathing an ambu bag will be used. We do not want to prolong her agony. Because she is genetically programmed for a short life our goal is to keep her comfortable so we can hold her and love her until she passes whether it takes minutes, hours or days.
If we are so lucky to bring our baby home, a hospice nurse will visit our home regularly to help provide care and administer medications. Ironically, the hospice nurse has been the only person who's offered hope that we might have time with a living baby. No other medical professional will commit, much less offer up, an outcome. It's understandable.
We have discussed the process, the care, and the ethics of this decision with a genetic counselor, hospital social worker, specialists (maternal fetal medicine and newborn), midwives, labor & delivery and hospice nurses, and our families. We are comfortable with this decision and comforted by the knowledge that God's plan will eventually allow for Allegra's spirit to be reunited with her body. We feel death is not the end.
This is the hospice agency we chose...
This is our friend Loretta, who watched as her mother died in hospice care and now works to provide others with positive end-of-life experiences...
Ali, thanks for being willing to share everything that's happening with Allegra. I'm praying for you guys every day that you're comforted for the short time you have with her. She is a really special baby and so lucky to come to your family.
ReplyDeleteI've never met you before but found your blog as we discovered we are going to have a trisomy 18 baby. Juliet Faith:) We are 28 weeks and praying we can meet our little girl like you did. I just want to thank you so much for laying out your feelings and the facts. It has been emotionally wearing trying to figure out what we should do once little Jules comes. I have found such peace in how you loved on Allegra and God willing pray we can love Jules as much as you got to love Allegra.
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