Personal Stories

Epilepsy and my family – trials, tribulations and joys

23 February 2011
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Epilepsy and my family - trials, tribulations and joys

Nicola, our daughter will be thirty years old this month. She appeared to be a perfectly normal healthy baby and did everything she should do as she was developing. When she was about four and a half years old, I noticed tiny little tremors which were very hard for anyone else to pick up on, but not to me as I was with her all day.

The seizures then progressed to a little dance on the floor. On one occasion, while we were having our dinner, Nicola turned her head as if she was following a light and I knew she was going to faint. A few days later the same thing happened again. Eventually she was diagnosed with epilepsy.

Nicola's seizures are complicated and have never been fully controlled. She doesn't pass out, but could shout, run, jump, throw her legs up in the air (if she was sitting) or tumble right over the side of the chair.

Most mothers are worriers and I'm no different! Because of Nicola's difficult epilepsy and other developmental issues that had arisen, I often wondered what would happen to my daughter if something happened to me. Independent living for Nicola was something that was going to be a challenge as she was in need of parental support into her adult life. We were relieved when she was able to get a placement at the Moorehaven Centre, a sheltered workshop in Tipperary.

About six years ago, she had a vagal nerve stimulator inserted to control her epilepsy. I suppose it gave some relief from the seizures at night, which could have kept us awake for anything up to four hours at a time, when Nicola would be in and out of bed.

Then suddenly our world was really turned upside down. Four years ago last May, we discovered Nicola was pregnant.

It was just by chance one Saturday that I saw her fitting on a blouse and noticed that her bust had increased. Her periods had always been a problem - at one stage she had them for weeks at a time. She got a Provera injection at intervals, but then it got to the stage that she hardly ever got a period so the fact that there had been no periods at this stage was no real cause for concern.

Nicola had a GP appointment the following Tuesday as she had a sore leg. My husband was taking her and I asked him to mention my suspicions to the doctor. Sure enough, Nicola was about 20 weeks pregnant. You might say I was stupid not to have noticed earlier - although I would generally be very observant, the medication she was on appeared to have reduced her appetite and as she was always tired from the medication, the pregnancy symptoms were well camouflaged.

We were sent for a scan the next day and they thought everything looked normal. They were looking for spina bifida etc on account of all the medication Nicola was on. Just to be on the safe side, we were sent to Holles Street for a more advanced scan. We met two of the nicest people there and they discovered that there was something wrong with the little arms of the baby.

It was suggested that they would do amniocentesis, a procedure in which a small amount of amniotic fluid is withdrawn from the amniotic sac (the membranous bag that surrounds the foetus in the uterus). That test was to be sent to Glasgow and it would take 2-3 weeks to get the results back. The kind doctor said that he would probably be able to give us some news within a few days and sure enough he rang to say that there wasn't a syndrome attached to the baby. He said that it was a little girl and that only her hands appeared to be affected. Once she knew it was a girl, Nicola immediately picked the name Chloe. I cried for two weeks and couldn't talk to anyone. My husband
Seamus had to tell my own parents.

You might wonder while reading this why Nicola wasn't on the pill, but I never honestly believed she was sexually active. I had discussed it with her and explained that she would have to use some sort of contraception, as it was inadvisable for her to get pregnant given all the epilepsy medication she was on. Nevertheless, she had been on folic acid for a couple of years prior to becoming pregnant.

Help is very scarce when you really need it. A big issue for our family was of course Nicola's ability to look after the baby. All I really wanted was for someone to tell me that we'd get through it and that we'd be OK, but it took a lot of looking before we eventually found someone to help us adjust to this situation.

The pregnancy continued and the seizures continued. I thought at one stage that this is God's way - we'll rear this baby and our daughters seizures will stop. I had often read that pregnancy can bring on seizures - I was hoping that in our case, the seizures might cease.

We had an appointment at Holles Street again on September 29th. I was now at the stage that every time Nicola moved at night, I ran to her room. We are at least a two hour drive from Dublin, so it was very frightening in case anything happened in a hurry. However, our friend in Holles Street admitted her that day and she was induced. Nothing much happened during the night, but labour kicked in the next day. During delivery, the baby's heartbeat started to get too fast and an emergency caesarean had to be carried out. To her great credit, Nicola coped very well with the labour.

At 3.20am on September 30th, little Chloe was put in my arms for a few seconds before they rushed her off to the Special Care Unit. Upon examination, she had a heart murmur, a soft palate which would have to be repaired and had radial club hands. She spent three weeks in Holles Street. Seamus and Nicola went home and I stayed with the baby, who had to be tube fed.

Chloe was then transferred to Clonmel hospital, which was a lot handier for us. On the days I wasn't working, I travelled to Clonmel to spend the day with her. We were worn out from all the travelling. I asked if they would let us bring her home and it was suggested that we bring her home for a weekend at first to see if we could manage. We did this and then we were told that if we learned to change the feeding tube, we could take Chloe home permanently.

Changing the tube was not a nice task. It needed to be changed weekly and I cried before I did it. The baby cried when I was changing the tube and my daughter and husband also shed tears watching the two of us.

We had great support from our youngest daughter, Lisa. Chloe had to be tube fed every four hours and she would take her into her room when she came home to let us have a night's sleep. She was brilliant for a young girl.

We were home for a week and doing the best we could when Chloe started to vomit one night. Back to Clonmel we went and after tests they discovered she had Pyloric Stenosis. A bed became available at Crumlin after a few days. Chloe went there by ambulance while I headed by train. She had her operation and we spent ten days there. Could anything else happen?

In December, Chloe got her first seizure. I couldn't cope with that at all - I really thought we had all been through enough. We headed for Clonmel one morning and she was practically dead in my arms. I thought this was it. We stopped in Cashel Hospital where they treated Chloe and brought us by ambulance the rest of the way.

The following February 14th, when lots of people are celebrating St. Valentine's Day, we were in hospital again as Chloe was having seizures on and off all day. Many more visits to Clonmel followed over the next few months. In June, Chloe had her soft palate repaired in Temple Street, but after that she had a setback and we spent another 10 days at the hospital.

In November that year, we had organised a babysitter as it was Lisa's 21st birthday party. Chloe got a seizure and Seamus stayed at home with her. I'm delighted to report that was the last time she had a seizure - she is on medication, but it hasn't increased since then. She is due back with the neurologist soon for a check up and an EEG and I'm hoping Chloe will be weaned off the medication, as I know only too well how the drugs can slow one down.

Our house isn't all doom and gloom. Chloe is coming up to her fourth birthday in September. Whatever reason she was sent our way I don't know, but she has touched so many hearts along the way, surprised all the professional people that have been dealing with her, brought so much love into our lives and brought us closer as a family.

I'm not looking for sympathy - far from it - there are probably a lot of people out there who are a lot worse off than us, but on a really bad day you don't think of anyone else.

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