CP Diaries: Episode 11 Pregnancy and Predjudice

Disclosing your Disability – A Personal Choice

In the early 2000s, Mark and Alex met in a bar and they immediately clicked. There was always that awkward moment when the comfortably seated then-twenty-something would need to rise from her seat to use the bathroom, and some apprehension surrounded the way that Alex looked physically to Mark as she walked past her possible new suitor. There was some nervousness as she really liked him.

When she returned, Mark asked what had happened to her. Alex responded as she usually did: “I was in a car accident, and I don’t like to talk about it” immediately shutting down more discussions or questions. She emphasised that by choosing not to disclose her Disability throughout life, it has protected her “like a cave” from exclusion and feelings of shame throughout her childhood.

Deciding to have Children

“Don’t you think you need to tell him the truth, even if you plan to have children?” Her father questioned her when it came to discussing taking their relationship to the next stage. Alex admitted to not having the time to say, “sorry I lied to you,” when it came to being dishonest with Mark.

As for deciding to have children, this was something she did not take lightly. There were overwhelming thoughts and feelings and lingering fears for her. Mark was about ten years older than her.

“What would giving birth be like?”  Will he (Mark) finally find out “my truth?”

Finding an understanding Healthcare Provider

There were no issues with Alex and Mark falling pregnant.They knew within three weeks. It was both a stressful and joyous time.

With the news confirmed, Alex set about researching and finding an understanding Obstetrician and Gynaecologist. She was very understanding regarding Alex’s non-disclosure of her CP to Mark and respected her wishes of non-disclosure to him.

“Unlike other doctors, she was cool with it, [she said] This is your story, your body, no one has to know, I don’t feel that it would be an issue from here onwards anyway…which of course was wrong, but it certainly helped me feel comfortable working with her in my first pregnancy.”

Others (doctors) thought it was not morally or ethically okay that she hadn’t told her partner, and Alex recalled some challenged her non-disclosure decision.

“It is areally hard decision to make…There is never a ‘good time’ to disclose that youchose not to tell your [now] husband: “Remember that time we met, and I lied…?!”

Alex’s doctor knew that she wanted a natural birth, as most women do (from a healing and recovery point it can be easier than a C-section) but gradually, Alex’s mindset shifted to wanting a C-section. It was preferred as easier for her and the baby.

Navigating the changing Body

Alex’s first pregnancy was straightforward. Like most women, she gained weight, and physically she felt “absolutely amazing.”  She noted her feet widening as time passed (she highly recommends wearing well fitted shoes) and suffered nausea andr eflux issues.

“I felt more capable than I ever had…I didn’t feel stiff, and I didn’t feel sore…the hormones helped relax my muscles…and I’m thinking this is quite good, [being pregnant] like maybe this is something I should do forever!!”

 Hospital After-care: Powerless & Overwhelmed  

After the ease of the first pregnancy and a C-Section birth to a son named Jack, Alex specifically told her doctor she didn’t want to be stuck in bed and completely immobile for her after-care plan.

The nurses took away her call bell and removed her mobile phone from her reach. Alex had a catheter in as well.

“I felt powerless and overwhelmed,” she says. “My child was crying, and I couldn’t reach him to feed him…I remember having to try and climb over my bed rails whilst holding my catheter and grabbing him to feed him…then a student nurse came in and said that we can’t attend to you at the moment… and I think she saw in my eyes that she better get somebody now.”

Keeping Alex immobile in bed and excluding her from their decision making and providing her with inadequate aftercare Support, the nursing staff told Alex they had made that decision “as a team.”  

“I removed my own catheter, called my doctor, and said “Are you aware of this, because this was not what we had discussed as my After-care plan.”

Her doctor was furious, calling the ward and gave the nurses a blast. Alex was immediately put in a much larger room and was quickly issued several apologies from the Nursing Unit Manager.

Second Time around – Not all smooth sailing

Her second pregnancy with her daughter a few years later (at a different hospital) was much harder. Alex was unsure if she wanted to do i tall again. It took longer for her to conceive the second time, hence a longer gap between each child.

By the time she was three weeks’ pregnant, she didn’t need to take a test. She knew instinctively that her body was reacting to the extreme hormonal changes. It wasn’t coping as well due to her lack of muscle tone, spasticity, lack of general body rehabilitation (after baby number one), and her muscles relaxing.

Alex described her pelvic separation pain as one of “the most excruciating pains I’ve ever experienced.”

 Unstoppable Mum-to-Be

At four weeks Alex wore a full girdle to hold her pelvis together. There were no surgical treatment options for her (due to pregnancy) and only painkillers such as Panadeine Forte and having some needling and Acupuncture sessions.

(The doctors) “They were pretty blown away that I continued to work up until 34 weeks, and that I was still walking without a frame or crutches or in a wheelchair.”  

There was no stopping Alex, she was still working and managing to push through the pain.

“I was kind of proud of my resilience and the ability to manage the pain at such a high threshold…or whether it was my naivety.”

However, Alex’s gritty determination to soldier on came at a cost, due to the elevated levels of pain she experienced, and things quickly began unravelling.

“I fell at 34 weeks, [having refused to use any mobility aids] passed out, and when I came to, I realised I was in labour...I had put myself in danger and my unborn child in danger. It was quite embarrassing to have that happen at my workplace in front of my colleagues and clients.”

It was too early to give birth, so she stayed in hospital on monitored bed rest for almost two weeks. She experienced many spasms which initially she thought were due to her CP, but it was hard to differentiate between what a labour pain was and what a spasm was, as Alex hadn’t experienced any contractions during her first pregnancy.

This made her extremely anxious. When a Braxton Hicks contraction started, it offset all sorts of different body spasms. At 36 weeks and three days, her daughter Hailey was born by planned C-section.

The Physical toll of Pregnancy, Cerebral Palsy & ageing

The post birth After care experience after having Hailey wasa totally different experience for Alex, who described it as a “joyful” recovery time. This time, she was able to get out of bed and move around.

“The pain I had experienced through the whole pregnancy had subsided dramatically afte rgiving birth [to her]…the pain in my pelvis area had disappeared.”

Following her second baby, Alex has now realised that something does happen to our bodies that ‘ages’ us differently when we have CP. She believes that something physical may affect us differently in our thirties.

“Something does happen to all of us! I hadn’t really thoughtof it that way until I joined this Community, [CPSN].” “Because of the way we treat our bodies and our gaits...”  There has been a big physical shift for her and many health and wellbeing “repercussions.”

She attributes a significant “lack of incidental exercise” during the COVID-19 Pandemic such as walking to and from her car each day at work as a contributing factor to why her physical and overall health has takena slide due to balancing her priorities post-pregnancy.

“Having a toddler and newborn baby to care for was very challenging for me.”  

Reactions from other parents regarding having children & Cerebral Palsy

Alex said that she found how people reacted to her CP was varied, impacting her children, and how they were treated at school. The family moved twice, for the sake of her children’s Education. The parents’ reaction inthe new school Community was revelationary, and a test on them all emotionally. This was a major fear for her.

“To find your own tribe, or families that will accept or exclude has been the most challenging part of being a parent.”

In the public school sector, Alex says the parents were “more judgemental, not accepting of me as a parent and my children.”

“Birthday parties were difficult, particularly in our house. They [parents of invitees] didn’t feel their children would be safe in our house, or my care.”

Once her children were older, they had parties at external venues, such as trampolining venues. They were usually inaccessible for her to attend due to her mobility issues.

She stresses though, that learning to adapt over the years is the most important thing to keeping her family happy.

“I’m not sure if it would be any different now if they [parents at the school] knew it was CP or a motor vehicle accident.”

 Happy after Change

Both of Alex’s children now attend Independent private schools and are happy and thriving. The extra financial burden of a private school Education has meant that Alex has had to return to a full-time job, but she was grateful for the school Community support that she has received and content that she made the right decision.

“The kids and the families are different. [From the Independent Private School] They have welcomed me with open arms. They’ve offered me support, at times when I’m running late, or working late, they’ll pick up the kids for me.”  

Reflecting on her Journey – What Alex would do differently

Looking back Alex believes that she should have prioritised getting into Physiotherapy regularly or Pilates before or after having children. She would have done more to help her overall health and wellbeing, taking thetime to understand her body and her condition.

“[Iwould] have a better overall health and well-being feeling of myself, so that Ican be the best parent that I can possibly be.” I would invest in me…to help support me and keep me strong.”

She stresses that pregnancy isn’t the same for everyone who has CP, and everything can vary from everyone’s physical abilities, outcomes, and side effects. Some women may experience similar symptoms, while for others the outcomes may be different.

“You’ll never know any other love that you have ever felt for your own children until you have them…I’ll do anything for my children. If you’re fearful of what might happen to your body, I think the feeling you have as a parent will take that away.”

* Names have been changed to protect privacy

If any of this content has caused you distress, please reach out to the relevant organisation/s:

• Lifeline: 13 11 14
• SANE Aust: 1800 187 263
• Relationships Aust: 1800 364 277
• Beyond Blue: 1300 224 636 

DISCLAIMER: Please note that while we welcome the Cerebral Palsy Community to share their stories, it does not mean, as an organisation,we endorse and agree with the opinions of our interviewees. CP Diaries is a safe space that allows people from diverse experiences and backgrounds to share their opinions and stories, as a way to generate respectful discussions.

You can view the full interview below, or via this link

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