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Friday, May 18, 2018

April's Birth Plan- Trisomy 13



When going through the emotional turmoil of having an unborn child with a terminal condition, it is near impossible to think straight. There are a million things going through your mind, and so many things to take care of, yet so little energy and time to do so.

I was incredibly lucky to have a medical staff that was proactive, and incredibly prepared. They helped us prepare along the way, and I'm forever grateful for that.

I've heard so many stories of hospitals, and medical teams being insensitive, and down right acting in disgusting manners when parents choose to induce, or (terminate for medical reasons). 

As in, I've talked with moms that had their baby handed to them in a bedpan. I've talked with moms that have had their moments with their baby forced to be in the bathroom, instead of in a nice comfortable room.

I've talked with moms that weren't given time with their baby to honor them. They were treated so poorly and it's heartbreaking.

There are hospitals and medical staff that will take care of you, however. There are hospitals and medical staff that will honor your wishes. Find one. The one we went to is Johns Hopkins in Baltimore, Maryland. 

We had such an amazing team of medical professionals at this hospital, that I would HIGHLY recommend this hospital. They went above and beyond for us. 

So, even if you are out on the west coast, I'd travel. I'd make sure that you and your baby are treated the way you deserve.

One of the ways they were able to help us so much, was by reading our birth plan. I didn't have to explain what was going on to every shift change. I didn't have to go over the details of our dying daughter for the umpteenth time. 

Thanks to one of the chaplains at Hopkins, we'd been given the idea of creating a birth plan. That birth plan was printed and hung on the board in our room, and another copy was hung outside of our door, and probably one in our chart. 

We were able to think through our wishes and desires ahead of time, and get it all out on paper. I didn't have a birth plan for my first daughter. 

I knew full well that I was just going to have to go with the flow. My only request was an epidural! 

But, with something like an early induction, when you know your child's life will be ending, there are a lot of T's to cross and I's to dot to make sure your plan happens, and happens the way you want. 

So, today I'd like to share our birth plan. A template was given to me by a chaplain at Johns Hopkins. I tweaked it to work for us, and you can do the same. 

I've taken out phone numbers, and some names for privacy reasons, but the important things are still here. I left all of our specific details and wishes so you can get a full picture of what we were envisioning for April's birth.

Please feel free to download a copy of this birth plan (at the bottom of the post), and edit it to make sense for your family. If nothing else, it might just get you thinking about all of the things to include. 

I know I was super thankful to have as many resources at my disposal as possible. This is just one more resource for you to use as well. 




Birth Plan- Katrina Villegas

Our overriding wish is that we keep our baby, April Rey Villegas, pain free. If she is alive for a brief moment, we want to comfort her in our arms and say goodbye peacefully. We want as much scientific learning to be done as possible, and welcome/invite medical students and residents to any and all parts of the induction, delivery, examination and autopsy.


Essential information
Baby's name: April Rey Villegas
Parents' names: Katrina and Joseph Villegas
Older sibling’s name: Caroline Villegas

Contact numbers for family:Mom’s cell (insert name): 
                                                    Dad’s cell (insert name): 
                                                Grandparent’s cell (insert names): 
                                                Grandparent’s cell (insert names): 

Contact numbers for contacts at Hopkins:

Chaplain Kat helping to coordinate birth plan
Katie R. (genetic counselor with fetal therapy group) helping to coordinate tissue donation process

Contact numbers for tissue donation with the University of  MD: 410-706-1755

Contact number for photographer: insert name and cell

Summary of Pregnancy & Diagnosis
April Rey was diagnosed with full trisomy 13 when we were 15 weeks into the pregnancy. Since her condition is terminal regardless of our path, we are choosing to spare her any pain by inducing early (19.5 weeks).

Wishes for labor and delivery

 Vaginal Birth

If induction/vaginal delivery does not work for any reason, I’d opt for a c-section over an abortion procedure. We want her body intact for tissue donation, and to hold her and say goodbye.

 Comfort measures and pain relief for the mother:
Reduce physical pain as much as possible without compromising my ability to deliver April. Would like an epidural. I received an epidural for the birth of my daughter (Caroline), and it was the perfect amount of pain control. I asked for minimal relief (take the edge off).

I wanted to be able to have full control over my legs, and feel when I needed to push. This was accomplished perfectly, and I’d like the same with this birth if at all possible. I have a slight herniated disc between L4-L5.

I’ll be in plenty of emotional pain, so if I can minimize physical pain I’d be grateful to have that relief.

 Cutting the umbilical cord: Can be done by medical staff.

 Support people you wish to be present: Only my husband during labor/delivery
 
 Photographer:
We’d like a photographer present during delivery and after to capture as many moments as possible. We do not want my family to have to worry about taking photos while we are grieving and saying goodbye to our daughter.

Please keep (
insert name) updated as to my status for delivery. She needs to have enough time to make it for delivery, ideally, in case April is alive for a brief moment.


(insert name and cell again)   She’s planning to be on call and will be expecting a phone call indicating that she should come!

 Medical students/residents:
We’d like for as much scientific learning to be done as possible. Medical residents and students are welcome and invited to observe the induction process, delivery, and April’s examination and autopsy.

We would like April Rey to be put in my arms as quickly as possible. 

We do not want her to have any painful procedures.

If she is alive for a brief moment I want that moment to be in my or my husband’s arms.

●  Wishes for our time with our baby:

We would like a few moments to hold April and say goodbye (just my husband and I). When we are ready, we’d like for the baby to be bathed and wrapped in a blanket. We’d then like for our daughter, Caroline, to be brought in to hold her baby sister.

After our immediate family has had our time, we’d then like to invite grandparents to join us in the room and have a moment with April as well. We would like April taken away as soon as everyone that wants to has had a chance to hold her.

 Older sibling:
Caroline is 2.5. She’s asked to meet April and hold her. We’d like to make sure that April is clean and covered nicely so that she is presentable for her.

Caroline will be with her grandparents in the waiting room, and we’d like for just Caroline to be brought in (my husband will likely help bring her in) so we can have a few moments just with her.

 Photographs:
We would like our photographer 
(insert name and cell again)  to come in to take pictures during delivery and after April is born.

 Keepsakes:
We want all the memory work we can get. We are interested in the memory box with handprints, footprints, etc. We would also like any other keepsakes we can take with us such as April’s ID band.

 Birth Certificate:
If April meets the requirements, we’d like an official birth certificate. If she does not take a breath and qualify as a “live birth”, we’d still like an in-house certificate to acknowledge her birth. Chaplain Kat at Hopkins (443-223-8433) was looking into all of this for us.

●  Plans for April’s body:

April Rey’s body is being donated to science. Katie R. at Hopkins (insert phone number) is helping to coordinate tissue donation process.

We’d like an autopsy done and for results on findings to be sent to us. Her tissues (brain, blood and skin) are being collected for the University of MD brain and tissue bank. Again, Katie Rock is helping to coordinate these efforts.

Once tissue collection and the autopsy have been completed, we’d like for her body to be sent to the Maryland State Anatomy board for cremation.

We do not wish for her ashes back. We’d like for medical students and residents to learn from April and be a part of her medical examination, autopsy, and tissue collection.


Feel free to copy and paste the above birth plan. 

If you'd like an editable Word document, and a pdf emailed to you, please go to this link: 

https://www.etsy.com/listing/615143563/birth-plan-template-early

I apologize... I am unable to upload documents directly to the blog, so Etsy was a good secure way to send this document.

Etsy would not allow me to make this a FREE item as I desired....

As a result, I've decided to charge a minimal fee and ALL proceeds will go to helping moms like you and me get through this. 

-Katrina

Other Posts of Interest: 

See our Trisomy 13/April Rey page here. All of our posts along this journey have been kept on this page.

Baby V #2 Update 15 Weeks- The Longest Wait of Our Lives

Trisomy 13 - The Day After Our Heartbreaking News

Genetic Counselor Questions Asked and Answered

Trisomy 13- Why Would I Ever Consider Not Fighting the Fight?

Trisomy 13- Getting More Information & Our Plan Moving Forward

My Worst Fear That I HATE Admitting      

Trisomy 13- April Rey's 17 Week Anatomy Scan


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