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Parents experience... |
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Pregnancy, birth and MEHeather Whalley, from Lancashire, UK, describes her experiences of pregnancy and birth, as a woman with myalgic encephalomyelitis (ME). I was diagnosed with myalgic encephalomyelitis (ME) about three years ago. After reading about it, I realised that I’d had ME since 1996, the year I gave birth to my first child, Robyn. Complications after birthThere were complications after the birth and the placenta was removed by surgery. I was quite stressed after that. I went back to work in March 1997 feeling tired but assumed it was from having just had Robyn in November. The tiredness just kept getting worse. I was going home from work every night and falling asleep by eight o’clock. It was not unusual for me to fall asleep in mid conversation. My sleep patterns were erratic. Some nights I slept but was restless during others. I was also putting on weight. In 2001, I saw my doctor and asked whether I had an under-active thyroid gland. He did a lot of blood tests and, to my horror, found that my gamma gt levels were up. (Gamma gt is a liver enzyme, levels of which are raised with excessive alcohol consumption.) He asked me to cut down on alcohol. The problem was I very rarely drank it. In August 2001, I was given an appointment to see a liver specialist at my local hospital but not until January 2002. My symptoms escalated and I began falling asleep at work. I became pregnant again but I didn’t realise it until I had a miscarriage in January 2002. After the miscarriage, I had a D and C (dilatation and curettage), which showed that it was a molar pregnancy and I had trophoblastic disease. This is an uncommon complication of pregnancy, in which there is an abnormal overgrowth of placental cells (called trophoblasts) causing a mole (called a hydatidiform mole) to form instead of a baby. A hydatidiform mole is often harmless and the body gets rid of it naturally but the mole can split and spread via the blood to other parts of the body. I had a split hydatidiform mole which ended up in one of my lungs. I had to have low-dose chemotherapy. I started finding it difficult to walk as the tiredness took a complete hold of me. I didn’t go out of the house properly for about five months. We had to buy a wheelchair to get me about. That was a horrible 12 months. DiagnosisIt was the liver specialist who suspected, because of the tiredness I was suffering, that I had ME. He sent me to another specialist, who diagnosed ME. In April 2006, I became pregnant again. Apart from the tiredness and a few other symptoms such as a dry mouth, babbling, forgetting the subject of conversations and muscle aches, I felt healthier. My sleep patterns improved so I got a good night’s sleep. However, I suffered nausea which made eating difficult – some days I could eat a sandwich and other days the idea of food made me feel sick. When I reached 28 weeks, my blood pressure started to rise quite high so I was monitored closely. The medical staff asked if I was having headaches and checked for pre-eclampsia, which I didn’t have. The ME caused me to have headaches but actually they reduced during pregnancy. Second time aroundI was taken into hospital about three times because of my high blood pressure and the doctors said my pregnancy should not go over 38 weeks. On 12 December, after trying to stabilise my blood pressure, they decided to induce labour as the baby was at risk. At first, nothing happened so I was induced again the next day and my daughter, Hermione Paige was born on 16 December 2006. I had a bad time. The labour pains took all my energy. I couldn’t cope and was in and out of consciousness. A venteuse (vacuum pump) was used to help deliver Hermione. I think, in the circumstances, I should have been given a caesarean but the midwives were brilliant and really looked after us. My partner told me there were about 10 people in the room with me. I don’t remember much about it. Since the birth, my headaches and dizziness have returned, and I often feel light-headed. My gamma gt levels are now back to normal. I still have to use a wheelchair to get out and now have two powered chairs. Two months later, all I do is rest, see to Hermione and cook for Robyn and my partner, who works all day. The housework gets done on a good day. Pregnancy and MEWhat is ME?Myalgic encephalomyelitis (ME) is one of several names given to a poorly understood, highly debilitating disorder. Other terms used include chronic fatigue syndrome (CFS), chronic fatigue immune dysfunction syndrome (CFIDS) and post-viral [fatigue] syndrome (PVS or PVFS). There remains a lack of consensus within medical, research and patient communities regarding the defining features of this disorder. The ME Association (UK)The ME Association provides information, support and practical advice for people who are affected by ME/CFS/PVFS and their families and carers. It produces a factsheet on pregnancy and childbirth. DPPI invited the ME Association to comment on Heather’s experience. The comments received are summarised below. ME/CFS/PVFS usually has an acute onset following an infection. Major stressful events – which can include operations, labour and trauma – have also been known to trigger this illness. Although abnormalities in female hormone patterns have been reported in ME/CFS/PVFS, there is no known link to hydatidiform mole. Most women with ME/CFS/PVFS have a normal pregnancy and are able to deliver their baby without the need for a caesarean section – unless there are recognised medical indications for doing so. Pregnancy can cause, or exacerbate, a number of fairly common medical problems such as high blood pressure, constipation and nausea. Where a symptom such as nausea already exists as part of someone’s ME/CFS/PVFS, this is likely to be exaggerated. New mothers with ME/CFS/PVFS are likely to need significant practical support. This will need to be carefully planned in advance, and take into account ways to balance physical and mental activities throughout the day. Charles Shepherd, Honorary Medical Adviser, ME Association Contact detailsHelpline: 0870 444 1835 E-mail: meconnect@ meassociation. org.uk www.meassociation.org.uk |
