Our lovely granddaughters are now 6 and 3 and I had intended to write this a very long time ago.
However, one thing about HG is that memories do not fade very quickly, if at all. I may have forgotten some of the small details but the rest of it is as clear in my mind as if it had only happened yesterday. It may sound dramatic to say that at times I feared that my daughter might just fade away out of her life in front of my eyes, and in modern times I don't think this would happen.....but I'm sure I am not alone in struggling to believe during those years that life would ever be normal again.
It was my sister who first mentioned the H word! Our whole family had been overjoyed to hear the news that my daughter Fiona and her husband, were expecting their first child, and I could barely contain my excitement at the thought of being a grandmother!
Then it all started.
Fi was suffering from 'morning sickness' but from the outset it seemed to be something rather more. Was it really normal to be so relentlessly sick all day, for her to be climbing up stairs on hands and knees because she was so weak, to be unable to keep even water down, and to be barely able to communicate with us?
Her job as a physio became a daily nightmare, and then impossible to maintain. I drove her to the GP and she was told that she was just unlucky. Some women are more sick than others. So we carried on and then the phone call came from my sister who had been surfing the internet for information and found out about HG.
She said 'Fi has got hyperemesis'...and it was such a defining moment.
All of a sudden there was a reason for what was happening - it had a name and maybe there was a cure. Unfortunately, this was not of course, the case! I will not forget the day Fi saw a different GP in her practice after she had been many times seeking help and been dismissed. A lovely lady who listened to her, tested her urine sample sky high with ketones, and told her she needed to go to hospital. Fi cried, and I cried with her. Relief that someone was listening at last. T
his was just the beginning of endless visits to hospital, always through A and E, which we weren't allowed to bypass, even though we knew what was wrong and where we would end up. Hours sitting with what Fi's brother crudely called 'the vom kit'!!....the cardboard hat, a plastic bag, wet wipes and a pile of kitchen towel. Other patients gave us a wide berth, clearly thinking she had some terrible gastric disease. It was so difficult for Fi to wait for for long periods to be seen...very much a low priority in the triage system..... either feeling desperately sick or actually throwing up. I used to feel so utterly desperate and powerless as she either tried to lie down or put her head on her knees, saying nothing. The end result was always 48 hours in a ward on a drip, at which point she was able to manage a little to eat and looked very much better. 24 hours after leaving hospital we were back where we started.
My son in law is a surgeon and was very keen to keep her out of hospital! I had decided that the best thing was for the two of them to move in with us, so I could look after both, and I would often come home to find a drip rigged up from a curtain rail in our makeshift hospital!! I would serve Fi food in egg cups, coffee cups and saucers in teeny weeny quantities. She even struggled to eat these. Most of the time she was unable to cope with the light and lay in a dark room, only getting out of bed to crawl to the bathroom. Smells of all kinds were a nightmare for her, as I subsequently discovered is common among HG sufferers. We had to abandon cooking and live on cold food, and I wasn't allowed to wear perfume or have flowers in the house! Even the smell of water could start the' vom' process!! Amazingly the result of this terrible ordeal was Charlotte - weighing a little under 7lbs and in perfect working order. Truly a miracle!
Pregnancy number 2 was a leap of faith, in the hope that things might not be as bad the second time.
Sadly they were worse! I had never felt that Fi regained her strength fully after the first pregnancy, and there seems to be very little mentioned about the physical and mental health of new Mums who have gone through HG. Once the baby is born they seem to be viewed in the same way as any other woman who has given birth. The baby has arrived, the sickness is gone, all is well. The reality as I saw it very clearly, was a young woman with a body very weakened by her long ordeal, and a mind traumatised to a degree by it as well.
Had someone been that ill for so long with a disease not connected with pregnancy, it would have been considered necessary for that person to spend time recuperating and regaining strength. HG sufferers do not have that consideration, although perhaps six years on things have improved?
Of course pregnancy 2 brought another dimension to the problem in the form of a two year old child needing care, and a Mother too ill to give it! I found myself in the role of both mother and grandmother for the greater part of the pregnancy....on the one hand a joy and on the other absolutely exhausting! Between us we got through again, and Lucy was born safe and sound in March 2014. Unfortunately we were unaware that Fi had become osteopenic, and she suffered a stress fracture of her pelvis. This gave her months of great pain following the birth and she was on crutches, again unable to care fully for her children. I felt upset yet again about the lack of care for these women before they embark on another pregnancy, and also post partum. This is not the case everywhere I know, and there are some marvelous GPs around who are doing great work for their HG patients.
Throughout these difficult years the PSS was a shining light of hope and support for us!
Caitlin, with her huge work load, was never too busy to chat, and to offer wonderful advice on both a professional and personal basis. With her medical knowledge as well as having gone through three HG pregnancies herself there can be no better person to have on the end of the phone!! She is still working tirelessly for the 'cause' and we can't thank her enough! I've been pleased to take part in the first two rounds of the Definition and Core Outcomes research project for HG which is being carried out currently, and very much look forward to reading the conclusions.
There will be no more babies for my daughter (!) but we will continue to support where we can, and hope that there is a better future ahead for all women who find themselves unexpectedly facing the longest nine months of their lives!