As I recalled writing that document, I was also reminded of a time that I shared it with someone.  It was back in the early 2000s when my husband’s friend was about to welcome his first child.  He and his wife were beyond excited.  They were also a bit nervous.  James knew us long before we became parents.  Watching us go through the early years of raising children, and then seeing Ronan slip farther and farther away developmentally, James was determined to learn more than we knew to learn as first-time parents.  When he mentioned he had questions, I shared everything with him – everything! 

James had emailed that he and his wife had already read books and articles on a few topics – to include vaccines, and that they were now preparing for the hospital birth.  He added that they still had questions but didn’t know which doctors they could trust yet.  I told him asking for help was the first big step:

Yea!!!  You two are awesome.  I'm ready to send info--just give me specific questions and concerns.  I'm in between meetings today but should be home and on the internet more this weekend. 

Do you have someone to help Katherine after the birth?  Do you have family coming to stay with you?  I found that my first 2 weeks at home with the baby were very much honeymoon mixed in with holy cow, no one told me about the recovery part of having a baby!  Take lots and lots of naps, drink lots and lots of water, don't forget to eat and who cares about laundry (as long as you have clean onesies and blankets to wrap the baby in).  I'll be sending that package of baby items tomorrow.  I'm heading to the store today to stuff some more goodies inside it.

Hugs!  Cathy

James kept his next few emails brief:

Just finished our appt, and our wonderful doc agreed with you.  No hep B, no rubella, Vit K is ok, and we will coordinate all heel sticks!

Thanks, more info to us asap!!

My emails were longer:

Some staff at the hospital have been trained to do the same thing every day to every patient. That means that what is standard procedure for every newborn will be offered to you.  If you choose to do something that is not normally done (no hep B vax, let's say), you will honestly have thrown a cog in the wheel for some of these people!  It's not that they intend to go against your request, it’s just that it is so not normal for them to hear this. 

I had a nurse, who was also Ronan and Willem's nurse AND our neighbor, who looked at me and said, "Why would you not want your baby to get the vaccine or the eye cream?"  I thought she knew Ronan's history.  She didn’t, so I told his story, talked about our own health history, and connected the dots for her (and I had to retell his story about 5 times to various other people who took care of us that stay).  It really took her a second to stop what she was doing, listen to me and the reasons not to do this 'preventative' measure and then to take it all in.  She's been a postpartum nurse for TWENTY YEARS!!!! 

The nurse finally nodded her head and said, 'Oh, I see. I guess that does make sense."  Guess?  It did make sense!  I just went against the grain and had the nurses hopping.  I know I was being talked about, but it was in a good way since many people we saw after the initial 'do not touch our baby or else' was established, everyone came in happy, asking questions about us, Ronan, how we would deal with diseases for the kids (like if we were exposed to something that we could have vaccinated against).  I was in my glory telling them all the medical facts and how we really have straightened our own healthy habits out.  I love my soapbox and get right up there on it anytime I can. That time I didn't mind since I love Ronan so much and tell his story to anyone who will listen. 

I also made sure to include websites for James to look at and refer to if he, too, was questioned by any medical providers like we were.

I was cruising the net this morning and found this link on one of my favorite message boards.  Check out her extensive list of links here. http://www.danasview.net/parent3.htm#vaccines I refer to her site as my biomedical bible! 

I wanted to share what we’d experienced not to scare this dear friend of ours but to educate him.  He didn’t fully realize it yet, but he did have a say in what would and would not go into his newborn daughter’s body. 

We thought we had a say, but at one of our other children’s birth…

…one nurse was so uppity about me saying we didn't want the hep B.  She "conned" us into it saying that what if someone who is working around the baby needlesticks themselves and then infects the baby.  I was so naive back then and she really scared me into it.  The likelihood of that happening...

Besides the quick replies, the many exclamation points told me that the personal information I was sharing with James was indeed helping him:

Thanks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 

I just put Katherine to nap after we read your email, great advice for my checklist of do's and dont's I'm looking out for at birth. Any further info on the vaccines that you ran into trouble with would be appreciated.  You really need to watch the staff that closely?  I'm going to speak with our doc on everything this Friday.

Anything, I mean anything you think of, email.

I feel much better every time I hear from you all, thanks.

So, I kept writing to him.

Here's a copy of the birth plan I used. The doctor never said I should have one, but all my veteran mommy friends told me about it.  Reasons behind having one...you just need to cover all bases. In the first few hours, the nurses/staff will want to do those “normal” procedures which include:  bath, vitamin K shot, hep B shot, erythromycin cream to eyes, hearing test and newborn screening. 

Some people don’t like it when you go against “normal”…

If there ever was a time for women to unite and work together, it’s when a child is being brought into the world.  Why a woman would be mistreated during childbirth by other women baffles me.  From the Yahoo! News article: 

“We need to be more cognizant of it and make sure that women feel empowered to come forward as well when they’re experiencing this,” Houry said.

But while cases of birth trauma and mistreatment of women during pregnancy and birth are not new, there’s historically been a stigma around talking about them. Caroline Malatesta gave birth to her fourth child at Brookwood Baptist Medical Center in Birmingham, Alabama, in 2016. After working with her doctor to devise a natural birth plan that emphasized autonomy and freedom of movement, Malatesta was physically restrained against her will while giving birth.”

Not nearly to the same degree mentioned, but I experienced trauma as well. 

Since I knew I was having this baby by c-section, I had different things done than what happens in a regular delivery.  I knew what the other kids' births were like, and I didn't want some of the same things done for this one.  I will share one thing that I wish didn’t happen.  That uppity nurse I had before was incredibly rough with my physical exam after I requested to delay vaccinations.  I wished I had asked for a different nurse during that birthing experience, but I didn’t know who to talk to about that.

I would suggest you give whatever your desire/demands are to your pediatrician (or hospital ped), OB/GYN, the hospital itself (we checked in Friday before our scheduled c-section and put the birth plan in my file) and for the head nurse. I would suggest seeing the nurses prior to your delivery date, too. They were very open but had a gazillion questions as to why we were so concerned. Make sure whoever is with you and the baby (my Mom was with me when my husband was gone) has a copy of the plan too. My Mom flew in to help us, so she was getting a ton of info to remember on our exciting day! I was left alone, meaning not questioned or looked down on, only a few times toward the end of my stay. By then, everyone knew not to mess with us!

The article I saw on Friday afternoon concluded with, “Women have these birth plans because they care about the safety of their babies.” 

They don’t mention it, but men care as well.  After I shared with James who he could give the birth plan to, I got an exciting update from him:

Hey, last night the fetal membrane ruptured prematurely around midnight.  We called the doc, went in this morning to confirm that the water had broken via ph test, grabbed a late breakfast, went for a walk downtown and finally checked into the hospital. 

She's minutes apart on the contractions, happy and motivated!  We're set for NO hep shot or rubella; NO bath; No procedures out of the suite (wonderful birthing suite, huge windows with big trees and mountain views and lots of room to move around).  Mom is on the way and we're expecting delivery later in the eve. 

Thanks for everything!

I was so excited!  I quickly sent a message:

Be positive!! You can make your demands known but know that you'll be repeating yourself for the first few nurse/doctor check-ins and during staff changes from night and day shift. Just be persistent and tell them why it’s so important to you and your child. Let us know how you and Katherine are doing once baby has arrived.  Let us know if you need anything! Can’t wait for baby to be here!

I don’t have a follow up email from James, but I can share that that baby of his is now a healthy and beautiful, accomplished student-athlete who loves sports, traveling and being with her best friends.  We’ve had the pleasure of seeing her grow up and grow up healthy.  Some may think I’d be jealous of that or jealous of a couple that I could steer in a better direction.  I will never begrudge anyone who asks me for advice and who manages to keep their child healthier than I could keep mine.  It thrills me to no end to see the next generation, like young Sami, grow up and conquer things I know Ronan can’t.  While he may have physical and intellectual limitations, Ronan has provided a powerful gift to other people and that is the gift of hope.   

James checks in on Ronan frequently and would visit us when work brought him through our area.  He’s devoted to my son I think in part because of what he saw happen to Ronan – and because what happened to Ronan didn’t happen to his daughter.  James and his wife took my birth plan, they took their knowledge and desire and created a reality that has brought only success to their child.  I will always wish them only the very, very best.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

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