There are two books that I have been wanting to read...in the hopes that I might glean a better understanding of what it must be like to be carrying a child that you know is going to die.
I have been involved with the perinatal bereavement program at St Joseph's for many years as a 'grief specialist' and also have been involved with our perinatal hospice program since it's inception 5 years ago. Last year~I started working with the program on the outpatient side ~ going in to homes and helping families get ready for the special birth. Yet, I often feel so inadequate. I have a heart for these families, but do I really understand what they are going through?
That is why I wanted to read these two books.
The first is a book titled, "Waiting with Gabriel" by Amy Kuebelbeck. I finished this book yesterday. Amy and her husband found out that their little boy, Gabriel had a severe heart defect called, hypoplastic left heart syndrome. Basically, the left side of the heart does not develop and the heart cannot pump blood to the body after the baby is born. Technology in health care is such that there are surgeries out there...but they are not a sure fix and the child is always a sick child. They chose to provide comfort care and not to put their child through painful procedures they may not work anyways. She does a good job explaining this in her book.
Instead~they chose comfort care and allowed their son to be born and live surrounded by love prior to his natural passing.
In an effort to help other parents and to honor their son she went on to start a web site on perinatal hospices. Our program can be found on this site and it is a clearinghouse of sorts for information for parents as well as health care workers.
The second book that I am wanting to start just arrived this week in the mail. It comes out officially May 1st, but I had pre-ordered mine on amazon. It is called, "I will Carry You" by Angie Smith. I have read her blog for sometime now and have been looking forward to her book. She and her husband were told that their little girl, Audrey Caroline, had a problem I believe, called Multicystic Kidney Disease. This is a problem where the kidneys do not make urine (which is the bag of waters) and then the lungs do not develop for they need the bag of waters to develop. When the lungs don't develop the baby cannot breathe once it is born. Along with her husband, Todd Smith (lead singer for the Christian group Selah) they went on to carry and love their little girl as she lived for 2 1/2 hours.
I am anxious to see what she has to say, especially since many of our parents have babies with this same diagnosis. You can hear the song that Selah released playing on my playlist too~what a wonderful way to honor and remember a little girl whose life was too short.
Angie is currently expecting another baby. You can read all about that on her blog.
Hoping that I will become a better nurse through reading about both of these women's experiences...