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Challenging the 'know-it-alls'

A parent, living in the UK, talks about the impossibility of getting information to make informed choices, and resisting pressures from the healthcare ‘know-it-alls’.

The walls in the antenatal clinic are covered with posters with the slogan ‘Breast is best’! The pressure is there. My mom breastfed all six children, and she had easy births with us all. My expectation was that I would do the same. What my mother had not had to do was fight for nine months to have a natural birth and to make decisions about breastfeeding based on personal research.

Pressure from all sides

Maybe I should have realised early on that my experiences would not be as smooth sailing as my mom’s. My general practitioner told me he’d rather I was under hospital care during my pregnancy because, as he put it “You are on a lot of strong (or did he say strange?) medicines …” The obstetrician pressurised me at every appointment to agree to a caesarean. I was a geriatric mom-to-be (mid-30s) and having twins was ‘a further complication’. I was pressurised to have tests to identify if there were any ‘problems’ with either fetus (BABIES!). Every appointment there was a fight about something.

My husband and I had given a lot of consideration about whether to have a baby. I had my first kidney transplant at the age of nine and began a lifetime of steroids and other anti-rejection drugs. I’d also been subjected to radiation treatment to lower my immune system (no longer a treatment for transplant recipients). I had grown up believing I should not have children; there was so little known about the side-effects of the drugs. No-one mentioned the radiation treatment.

Views on pregnancy have changed. I became the 50th pregnant kidney transplant recipient at my hospital. I was the hospital’s first mother to have twins.

My husband, who has a medical background, researched what the side-effects of the powerful drugs might be. There was actually very little information available, but even less from the antenatal clinic. My renal doctor considered it safe and that was all he told us. We made our decisions about the pregnancy and breastfeeding based on my husband’s research.

I had questions. I had concerns. I felt I had no support from the clinic. There was immense pressure to have a caesarean but no reason why. I finished most clinic visits in tears. I was exhausted from the fights, from not being listened to. I was having a baby (two!) This wasn’t another illness to treat.

Fortunately, I had the support of a couple of wonderful renal transplant nurses and I would escape to see them after antenatal appointments. After many tears, one of the nurses had a word with the antenatal people and the pressure for a caesarean ceased.

Breastfeeding challenge

In the end, the twins were born by caesarean. I lost the fight but my boy and girl were healthy and that I celebrate. The struggle didn’t end there, of course. I now began the challenge of breastfeeding. What I did not remember was that one of the side-effects of the drugs was that I couldn’t produce milk easily. I had stubbornly decided I would do the ‘normal thing’ and breastfeed. No comments from my husband would change this. I woke up in hospital after my first nap after the birth. One of the twins wasn’t in the cot! After a panicked look around I discovered a nurse feeding my baby cow’s milk formula! No discussion; again the medical ‘know-it-alls’ had taken control.

I struggled with breastfeeding. My experience did not lead to anything similar to those beaming photos of mothers advertising that ‘Breast is best’. I cried, and believed myself a failure in the first step of being a new mom. Breast pumping between feeds, I eeked out an average of 100ml of milk. I breast pumped, fed, breast pumped, fed. I only managed feeding one baby at a time (another failure for a mother of twins!) We laughed that I was a milk machine but how I cried and cried when I was alone.

My husband saw a poster with the contact number for a breastfeeding adviser. No-one at the hospital had offered me this information. She was lovely, supportive and encouraging. She was also concerned when she realised what drugs I was on. She was the only person, apart from the renal nurses, to listen to me. She respected our research and advised me about different techniques for breastfeeding. I had only ever planned to breastfeed for a few weeks, to give the twins the nutrients and the immune support that breast milk provides. I managed for eight weeks. While I can’t be proud of a natural birth, I am proud that I managed to give my twins some ‘Breast is best’ care.

Daily celebration

Without my husband’s medical knowledge and research skills, I’m not sure how I would have made decisions. The clinic experiences completely turned me off ever wanting to be pregnant again. I mourn the fact that my boy and girl were not born naturally, but I celebrate the fact (daily) that they are two beautiful, healthy children in spite of the drugs I’m on.

Now they are four. My cataracts are growing. I can’t see them when they run off in the playground so they must wear bright safety jackets. My osteoporosis gives me many nights of pain leading to exhaustion and I can no longer lift either my boy or girl. Looking after active, curious four-year-old twins can be tiring for anyone. Add all the bonuses of a lifetime of steroids and sometimes it feels near impossible to find the strength to carry on the daily activities of playgrounds, museums, making the meals and so on.

But one does. “Mommy,” says my boy as dusk descends, “hold my hand. You can’t see well in the dark. I’ll get you home safe.” And, quietly, my girl takes my other hand.

First published in Disability, Pregnancy & Parenthood international, Issue 55, Autumn 2006.

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