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Life as a Disabled Parent | Q & A | Pregnancy & Childbirth

(Title Image featuring family selfie)

Since the start of my blog, I've had a lot of people ask me to do more posts on disability and motherhood and everything that ties in with that. It's quite a diverse and broad topic and that's why I thought it'd be best to ask the readers out right. This will be a series, starting at the beginning with "Pregnancy & Childbirth" related questions..

Before we get into the Q & A, just incase you're new to my blog. Thanks for popping by! My name is Fi, I'm a 29 year old Mum of 2 little girls. Abbigail is 5 years and Ava is 2 and we live in Greater Manchester, England! I was diagnosed at 3 yrs old with a rare form of Muscular Dystrophy called Multiminicore Myopathy. I've been wheelchair dependent since age 6. Both children are mine biologically and I had them via c-section despite being told I wouldn't survive carrying a baby!

I started this blog to help others with MD see that having children IS a possibility, to share what's helped me raise children with my limitations and hopefully help normalise parents with disabilities in society :)

So here goes!

Q: Were your pregnancies planned?

A: With my 1st pregnancy, I was on the pill but I was unaware one of my medications I was on at that time could make the contraceptive pill less effective. 2nd pregnancy was planned.

Q: How did you discover you were pregnant and how did you react?

A: I was 5 weeks pregnant when I took a pregnancy test after several people pointed out I was having mood swings, plus I was feeling really run down at the time. Abbigail wasn't planned and we'd been "safe" so I didn't expect it to say Positive. When it did after waiting the longest 3 minutes of my life, I just froze. My heart was racing so hard I thought it was going to jump out my chest., I was terrified! Nothing much scares me but realising I was pregnant when Dr's had previously told me it was next to impossible, though if it did occur my life and the baby's would be in danger. It was certainly a lot to take in!

Q: How did your family react?

A: Worried and concerned for my health and wellbeing.

Q: How was your first pregnancy?

A: In the first trimester I became very ill from around 6 weeks. I developed a condition known as Hyperemesis Gravidarum or HG, (which affects around 5% of pregnant women) where I was unable to keep down even sips of water. After not eating for 4 days straight and vomiting continuously. Unable to even keep down my regular medications, I was so lethargic, I ended up in A&E at 3am one night.

(IMAGE: Couple hugging while holding positive pregnancy test with the quote; "Hyperemesis Gravidarum: When it's Not just Morning Sickness anymore...")

I was admitted with stage 3 ketones which is where it shows in your urine, your body has run out of fat reserves and is breaking down muscle for fuel to function. This situation in someone with a muscle-wasting condition is very dangerous. They struggled to medicate me to control the vomiting. After a few days of zero progress I was transfered to HDU as my kidneys began to shut down. I was very very sick. They were at a loss what to do with me and had difficulty getting hold of my MD specialist for advice.

(IMAGE: 12 week ultrasound with the quote; "A mothers instinct is to protect the little life inside them, at ALL costs!) 

It was at this point a Dr drew across the curtain and tried to convince me to abort the baby now or I was going to die. I was in pieces and my family were distraught that I was told this on my own, as ill as I was.

Still unable to get hold of Dr Roberts at Wythenshawe Hospital, I made the decision to continue with the pregnancy and instructed them that they needed to stop focusing on my MD and control the vomiting. If I could only keep things down, I'd recover. I told them I needed an NG tube as I was so weak at that point, I'd lost my swallow. Eventually Dr Roberts got back to them and told them the complications were pregnancy related and should be treated as such. He agreed the NG tube placement was a smart decision. I was switched to a different consultant who asked me to sign a document saying I agreed to his alternative care plan. This new Dr wanted to see if giving me steroids, that are normally reserved to Chemotherapy patients to stop their symptoms would stop mine. I was put on 3 different steroids. Those along with the NG tube feeds got me well again after a month in hospital. I did have a second blip after a week at home, where they'd tried to take me off the steroids too soon and I ended up back on the Pregnancy Ward vomiting uncontrollably again. The plan changed to keep me on this cocktail until 18 weeks and try and wean again. Second attempt was fine thank goodness.

The rest of my pregnancy was relatively uneventful other than my mobility slightly worsening, pain in my back and hips from the extra weight but nothing I couldn't handle.

At 30 weeks I was admitted to Wythenshawe to trial Bi-PAP for the first time. Dr Roberts wanted me using NIV (Non-invasive ventilation) as precaution. He predicted as baby grew, it'd compromise my already limited lung capacity. So hopefully using assisted ventilation ahead of time would prevent an emergency respiratory situation. He was right to do this as it did become helpful nearer term as breathing became more difficult.

Q: Did you give birth naturally?

A: No, due to my muscle wasting condition it was deemed unsafe to try to give birth naturally. Contractions wouldn't be strong enough and baby would get distressed, with a high probability of needing emergency surgery. I gave birth via an elective (as in it was pre-scheduled months in advance) c-section under general anesthetic.

Q: Why couldn't you have an epidural?

A: Like many with MD, I had Spinal Fusion Surgery to correct my severe scoliosis at age 14. That involved fusing my spine from neck to pelvis with two Harrington rods, screwed into each vertebrate and then having donor bone grafts fill it in. There was no safe window of entry into the spine for an epidural due to all the metal work and fused bone. They did an ultrasound to see if there was any way around it as this would of been less risky than going under general. Sadly there was no entry way.

Q: How did that make you feel?

A: To be honest, I kind of expected them to say I couldn't have the epidural. I'd already thought of the logistics way before they explored the options. Though actually hearing that it was off the table, I was gutted. My instant thought was I was going to miss one of the most incredible moments of my life. The birth of my first child. A double whammy came when I asked if at least Abbigails Dad could be in the room to witness it for the both of us. Due to "health and safety" as I'd be under general, on a vent while they do the c-section nobody other than the medical team were allowed in theatre. The best they could offer was her Dad to wait outside and before Abbigail was to be whisked to NICU (which was also pre-planned as she was premature) that he could see her for a minute and take a picture. That he did!

Q: How was your recovery from the c-section?

A: My respiratory specialist Dr Bentley (who works along side Dr Roberts) had pre-arranged a bed in ICU for me to be transfered to right after the operation. He feared due to my breathing muscles being compromised that they'd struggle to extubate me off the ventilator. So they weren't going to attempt to do this in theatre, they wanted me in a more controlled setting with breathing expertise. They woke me up still intubated. We had a scary moment where Dr Bentley muttered that it wasn't showing on the machine I was trying to breathe against the machine. With 4 ICU Dr's around my bed, it took a good 30 minutes of me willing and forcing myself to breathe against it as they tapered the support down bit by bit. It was very frightening and I was highly emotional. I'd literally woken up, with a machine breathing for me, in a lot of pain and I couldn't even ask where or how my little girl was. They did however get me extubated onto BI-PAP.

Q: When were you able to see your baby?

(IMAGE: Handmade "Happy Birthday" card from the NICU nurses with Ava sleeping in an incubator) 

A: I didn't actually get to see Abbigail or Ava respectively until they were 4 days old. All I had was photos of them in NICU that their nurses took for me, which I was very thankful for! The reason I wasn't able to see them was because I was in ICU on one side of the hospital, both were prem (the girls are 3 years apart) so they were in NICU at the opposite end. Hospital policy prevented them from allowing NICU nurses from wheeling them through the hospital in their incubator to me in ICU and I wasn't allowed to leave ICU still needing breathing support.

Q: How did that make you feel not meeting them until they were 4 days old?

A: I found it harder with my eldest Abbigail because I didn't realise I wouldn't get to meet her right after I came around. I hadn't even thought to ask what the hospital policy was in such a circumstance. I felt very disconnected to Abbie and I honestly feared this separation could of triggered a PND type of ordeal. When I first met her at 4 days old, I remember asking the nurses to make sure this was MY baby. The photos I had of Abbigail, her face was covered as she needed C-PAP support. So I didn't know what she really looked like. After several visits I felt differently and thankfully built a bond. Did skin-to-skin etc. With Ava, I was prepared for the same scenario. So I wasn't as upset. I nearly never got to see Ava until day 5 in fact, because they had no hoist in ICU to get me in my powerchair. I pleaded with the ICU ward sister, if just this once she'd bend the rules. I just wanted to meet my new baby girl! It wasn't much to ask. She told me to hang tight, 20 minutes later she'd grabbed another nurse from the 2nd ICU who was willing to use her break to wheel me in bed through the hospital to NICU. I couldn't thank them enough. The nurses were so caring. I couldn't fault them! It was definitely a better situation second time around!

Q: How did you feel knowing you couldn't breastfeed?

(IMAGE: Holding Ava sat in my powerchair, bottle feeding for the first time since the NG tube was removed) 

A: It didn't start to affect me maternally until my milk suddenly came in the day after my first c-section, whilst still in ICU and hadn't even met Abbie yet. It didn't help when I visited Abbie in NICU for the first time and the nurse looking after her that morning asked me if I'd brought some expressed milk with me. Obviously completely unaware of my situation, her focus was on specialist Neonatal care after all, but it did rub salt in the wound initially as I explained why. Visiting in NICU you see many a mother sat next to their babies incubator, screen half closed and the unquestionable bottom half of the wards Medela breast pump poking beneath the curtain. I did have a period (especially while both were still in hospital) where I did feel like an inadequate Mother for being unable to come off these drugs for my childrens sake. I know it was medically necessary to keep taking them, but it was a bitter pill to swallow (pun intended 😏) seeing other Mums giving their premmies the best possible start in life - breast milk and I couldn't. I'm still to this day trying to change my mind set to "fed is best."

Q: Was there any major differences/unexpected complications with the two pregnancies and births?

A: I had a worse first pregnancy than my second, Hyperemesis wise. Possibly because they knew what to do the 2nd time round when I started being uncontrollably sick again, they just gave me the same steroid treatment off the bat before it get a proper hold. I was only hospitalized once with Ava and I was only in 2 days so that was good. Childbirth wise, I did have a scary complication in theatre during the c-section of my 2nd little girl. For some reason my womb wouldn't contract as it should do naturally after baby's birth. I started hemorrhaging severely, I had to be injected, 12 times with blood clotting agents. After I came round from the anesthetic the surgeon explained to me she almost had to perform a hysterectomy, as she feared the bleeding wasn't going to stop and they were running out of options. I had 4 blood transfusions in the days following and was very anaemic, pale, dizzy and vomiting. Vomiting after an abdominal operation is excruciating! They don't know why my womb didn't contract the second time round but it will now pose a risk of it happening again, should I go on to have a 3rd child at some point down the road...

Q: Did having children make your condition worsen in the long run?

A: I asked my MD specialist during my pregnancy with Abbigail, "Should I expect to see sudden deterioration in my strength as a direct result of pregnancy and child birth?" He answered honestly, yes but he stressed other women with MD he see's that have gone on to have children themselves seen to bounce back to their baseline strength function after about 3 months. Though he had nobody with my specific form of MD to compare to so he could only advise based on similar conditions.

I did feel weaker after my 1st for around 6 months but then things went back to normal. I did however lose the ability to roll from side to side in bed without assistance to a degree. With my 2nd pregnancy I bounced back after 2 weeks with no long term affects 👍

Thank you for reading this blog post and I hope you found my experiences interesting and informative. Despite the struggles, once you hold your baby in your arms it all melts away as you fall madly in love! Trust me 👣

Comments

  1. This is a really interesting read, thanks so much for sharing with #Blogstravaganza xx

    ReplyDelete
  2. Such an interesting post. Thanks for linking up to #Blogstravaganza

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