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Caspar's Story

On 9th September 2006 a little miracle happened - our son Caspar Glemser was born.

My name is Maebh (pronounced Maeve) Glemser and I have been a patient at the Louise Coote Lupus Unit since 1998. I was diagnosed with lupus in 1994, although looking back with the benefit of hindsight; I had clearly had the symptoms since 1989.

I met and fell in love with my husband, Jochen, in 1995, Between us we have 18 nieces and nephews whom we dearly love. Back then the dream of a child of our own did not seem so far-fetched. The preliminary diagnosis in 1994 was based mainly on skin and joint involvement, subsequent complications included; pleurisy, pericaditis and gastritis, but my optimism was never dampened and once recovery was complete my memory of symptoms faded very quickly.

Then in 1999 the world seemed to change with a diagnosis of Lupus Nephritis and the decision to treat the renal flare with a course of chemotherapy bringing with it the attendant risk of such treatment causing infertility. Having considered our options it seemed that hope, belief and trust in our medical team were all we had to rely upon. Jochen and I were not yet married and I often urged him to go and find a healthy wife but he stood firm, reliable and loving in his support, just as he has continued to do ever since. He would ask what I would do were the roles reversed - an answer was never necessary.

For several years my kidneys grumbled away, never settling down enough for the team to encourage us to start a family. In the meantime I developed bronchiolitis obliterans, a rare complication of the lungs in lupus and my exercise tolerance diminished rapidly. I became very susceptible to chest infections and had 2 episodes requiring admissions to ITU.

The initial drug regime had been long term treatment with prednisolone. Over the years the list of medications gradually grew to include; hydroxychloroquine sulphate, azathioprine or mycophenolate mofetil for immunosuppression, enalapril or methyldopa with nifedipine for blood control, ranitidine, calcitriol, ferrous sulphate, Cyclophosphamide, clarithromycin as a long term prophylactic antiobiotic against chest infections and further episodes of septicaemia and finally rituximab.

In January 2004 having spent the better part of 2 months in hospital and subsequent to an adverse reaction to cyclophosphomide, Dr D'Cruz and Dr Abbs suggested treatment with Rituximab. I was to be the first patient in the clinic to be given the treatment and once explained to me this solution seemed reasonable, given that other options were running out.

A year later in January 2005 Dr D'Cruz happily announced that my renal activity had gone into remission. I'm not sure that my next question was not entirely unexpected: 'could we now try for a family'? To my delight the reply was that my renal activity no longer contraindicated pregnancy but that my worsened lung function would now need to be assessed and would be critical in the decision to proceed with trying for a baby.

My chest consultant, Mr Twort, referred me to the obstetric physician, Dr Nelson Piercy, fortunately in June 2005 she confirmed that I was above the threshold which would, in her experience, contraindicated pregnancy. Jochen and I were thrilled! It was clear that certain medications would need to be replaced or removed from my drug regime and in August the changes were finalised. In order to ensure I was tolerating the new regime and that the lupus was still under control we were advised to wait for 4 to 6 months. Early in 2006 Caspar was a miracle waiting to happen.

Prior to my final admission to hospital I had 2 other episodes requiring hospitalisation. My total time spent in hospital was 3 & ½ weeks out of 30 weeks; probably a lot less than had been expected at the outset.
weeks

Towards the end of the Summer my lupus decided to flare - probably none too happy that the pregnancy had stolen its thunder! I was admitted on Monday 4th September at just over 30 weeks pregnant I was told that I wouldn't be going home before the baby was born. The question now was whether my lupus or the baby would provoke the delivery.

As it happened I didn't have to wait that long since Caspar decided he wanted to come out the following Saturday. Alarmingly his heartbeat started to decelerate and the consultant on call, Dr Clarke, decided that there was nothing for it but to deliver by emergency caesarean section. A short time and a spinal anaesthetic later, Jochen could see a huddle of people around the resucitaire table, seconds later came a good strong cry and we were told we had a son. A very tiny but exquisite little boy was brought by the neonatologists to his mummy and daddy for a first kiss; my heart could have burst. It was without doubt the most wonderful moment of our lives.

Caspar weighed in at a mere 1.17k or 2lb 8oz - approximately 2 bags of sugar! Thankfully none of the potential complications sometimes associated with lupus; no heart block, no neonatal lupus and from the general medical point of view he was only kept in hospital in order to gain weight and establish feeding, which he did over the next 5 weeks under the supervision of an outstanding team of doctors and nurses at the Special Care Baby Unit (SCBU). There is no denying that those 5 weeks were difficult, leaving your baby every evening just doesn't feel right as a parent.

I do not consider myself an 'unlucky' person because I have lupus, there are too many other facets to life to allow the illness to determine my sense of wellbeing. I'm fortunate to have been blessed with a wonderful family, to have met a treasured husband, to have the benefit of a progressive and supportive medical team and finally to have experience the ultimate joy of creating a living being whose little smile lights up the dullest of London Winter days.

For the purpose of this article I have touched on some of the past episodes of illness to show that nothing is impossible. My preferred treatment of this chronic illness is to come through these episodes and be thankful that they are over. Why would I dwell in the past when the future is lying in my arms?