The Other Plan....
During our meeting with the fetal medicine specialists, Genetic Counselor & Social worker we were advised that because Mylah was diagnosed with having Trisomy 18, our information would be forwarded to a hospice program to assist in her transition. The representative from the program Walk With Me contacted me last week wanting to set up a meeting. Honestly, I really didn't want to meet with her, but my mom convinced me to meet with them to see what was being offered to us.
The appointment is set for this Thursday.
I don't think there is a proper way to prepare for this meeting. When I hear hospice, I think of the patient being a elderly person or individual with a terminal illness that they've been battling with for years. I never thought it would apply to the precious baby girl that I'm carrying.
The docs at the hospital are so certain of Mylah's demise. Their medical statistics and/or experience has led them to believe that babies with Trisomy 18 won't live very long if born alive. However, my research thus far has shown me that there are children LIVING with this diagnosis. Many have made it way past the first hours of being born.
While trying to "mentally" prepare for this visit & what will be discussed I thought of some feedback that I could provide. There are programs & support groups for parents to help prepare for the loss of a child with Trisomy 18. During our meeting we were given the book; A Time to Decide, A Time to Heal written by parents whose children had birth disorders such as Anencephaly, Trisomy 18, Down Syndrome etc. We were advised that there were funeral homes that would help with the memorial arrangements some free of cost. Cemetaries with a Babyland where Mylah could be buried. A suggestion of cute little teddy bears that would hold her cremated remains. The hospital has a program that would cremate her for free. We were even advised to join the parent grief/loss support group, but I haven't experienced a loss & I'm not grieving.
Over the last couple weeks I began thinking... What about the OTHER plan? The Life Plan?
I began to jot down questions & concerns that I had, which I'm sure plenty of other mothers before & after me have thought of.
So my question's are.....
What services are offered to THOSE parents...
My answers.....
How about a list of pediatricians area who are willing to manage the care of a child with Trisomy 18? What about the cardiologists to examine the heart defects?
Where's the list of Trisomy 18 parent support groups? You know, the parents who are living with, caring for & loving a child with Trisomy 18.
Where are the social workers & home care nurses who help the family transition into home life with a Trisomy 18 baby? What about THOSE parents? The ones who have been told their baby is going to die, but the child defies all odds & survives.
I've come to understand that the medical world usually prepares you for the worst case scenario. I think that they should practice a little more in preparing you for the worst outcome & the outcome nobody expected.
I have a feeling that Mylah is going to be the Trisomy baby nobody expected & it would be nice to have some help along the way.
The appointment is set for this Thursday.
I don't think there is a proper way to prepare for this meeting. When I hear hospice, I think of the patient being a elderly person or individual with a terminal illness that they've been battling with for years. I never thought it would apply to the precious baby girl that I'm carrying.
The docs at the hospital are so certain of Mylah's demise. Their medical statistics and/or experience has led them to believe that babies with Trisomy 18 won't live very long if born alive. However, my research thus far has shown me that there are children LIVING with this diagnosis. Many have made it way past the first hours of being born.
While trying to "mentally" prepare for this visit & what will be discussed I thought of some feedback that I could provide. There are programs & support groups for parents to help prepare for the loss of a child with Trisomy 18. During our meeting we were given the book; A Time to Decide, A Time to Heal written by parents whose children had birth disorders such as Anencephaly, Trisomy 18, Down Syndrome etc. We were advised that there were funeral homes that would help with the memorial arrangements some free of cost. Cemetaries with a Babyland where Mylah could be buried. A suggestion of cute little teddy bears that would hold her cremated remains. The hospital has a program that would cremate her for free. We were even advised to join the parent grief/loss support group, but I haven't experienced a loss & I'm not grieving.
Over the last couple weeks I began thinking... What about the OTHER plan? The Life Plan?
I began to jot down questions & concerns that I had, which I'm sure plenty of other mothers before & after me have thought of.
So my question's are.....
What about the babies who survive?
What about the babies who go home with the parents?
What about the children who make it 6 months, 1 year, 5 years, 7 years? What services are offered to THOSE parents...
My answers.....
How about a list of pediatricians area who are willing to manage the care of a child with Trisomy 18? What about the cardiologists to examine the heart defects?
Where's the list of Trisomy 18 parent support groups? You know, the parents who are living with, caring for & loving a child with Trisomy 18.
Where are the social workers & home care nurses who help the family transition into home life with a Trisomy 18 baby? What about THOSE parents? The ones who have been told their baby is going to die, but the child defies all odds & survives.
I've come to understand that the medical world usually prepares you for the worst case scenario. I think that they should practice a little more in preparing you for the worst outcome & the outcome nobody expected.
I have a feeling that Mylah is going to be the Trisomy baby nobody expected & it would be nice to have some help along the way.
There's nothing mote powerful than a WOMAN of God and her love her child...U continue to research and seek and demand answers to the questions you have. While the world of medicine have evolved tremendously there is still nothing more powerful than the micrales we all know that God can do! You continue to be an inspiration for Mylah and Mothers everywhere! Thank you for sharing this journey and reamining true to your faith!
ReplyDeleteHere when and if ever you need me :)
Ranny A.