Pregnancy - Alicia: My Battle with Wegener's Disease book excerpt

I hope that you have been enjoying the book excerpts from Alicia: My Battle with Wegener's Disease over the past two weeks. Today I have my final extract, a chapter about Alicia's pregnancy.

I imagine my children are going to save me from my vanity and be my passion and fill whatever fears I have of the amazing time I’m having right now being gone.
— GWEN STEFANI, Singer-songwriter

Alicia was worried about the initial stages of her pregnancy, the first 12 weeks mainly. She didn't tell the majority of her friends and family until 20 weeks had passed. Although Alicia firmly believes that you can't live your life worrying about what might happen, she didn't want people to be constantly asking her how she was or if her disease had flared up again. She knew that everyone else would be terrified on her behalf and she didn’t want to give them that worry. 

It would be Alicia’s first child. She wanted to take things day by day and to enjoy her pregnancy as much as she could. 

Alicia had the normal ailments anyone would have, and when she had a headache, for example, she couldn’t help but think about the Wegener’s Disease, but for the majority of the time she was remarkably positive.

We were very lucky that the RVI was on our doorstep and it is one of the oldest and most prestigious hospitals in the country. It has been providing healthcare in Newcastle and the North East for over 250 years, and its maternity department is one of the largest in the UK, delivering over 6,000 babies every year. Alicia had been there regarding her teeth and the neurosurgeons given her first MRI to discover the extent of the Wegener’s Granulomatosis in her head.

The RVI also offers a complete range of maternity care, from midwife-led care for women with straightforward and healthy pregnancies at the new Newcastle Birthing Centre, right through to the highest level of very specialist care for women who are found to have problems that need close attention. This includes immediate access to a full range of support services including obstetric anaesthetists and specialists in medical conditions during pregnancy.

The RVI is one of only two hospitals in the North East to offer consultant and midwifery led care - this means that although most babies are born without the need for a doctor, the Maternity Unit has a specialist doctor on site at all times should they be needed.

Dr MacDougall was Alicia’s consultant at the RVI. 

He was the final member of the team that assembled around Alicia and would help her deal with her Wegener’s Disease during the pregnancy.

Alicia had no strong views on how she wanted to give birth. Her top, indeed only priority, was that the baby be healthy. Although the RVI has a birthing centre which offers different ways of coping with labour such as birthing pools, this option wasn’t open to Alicia. Alicia had to use the delivery suite instead.

My concern was for both mother and baby. I was concerned that if something as simple as removing a tooth could cause a flare in Alicia’s Wegener’s, what would the trauma of having a baby do? Beyond the birth itself, I also wanted to be sure that Alicia could care for her child afterwards.

Dr MacDougall assured us that there would be consultants on hand whenever Alicia went into labour. The RVI had a board where they listed each pregnant mother with an expected difficult labour. All of the staff were aware of each mother’s birth plan and all of the problems associated with each birth. They knew Alicia’s case, even if they hadn’t specifically seen Wegener’s Disease before. As we later found out, one consultant had actually delivered a baby safely to a mother suffering from Wegener’s Disease, which was reassuring.

Alicia: My Battle with Wegener's Disease - Pregnancy

Alicia: My Battle with Wegener's Disease - Pregnancy

The pregnancy proceeded relatively normally. Alicia initially told no-one other then her parents and parents-in-law. She didn’t want to tempt fate. Even if getting pregnant was far easier than she’d expected, the pregnancy itself could still be problematic. She was still managing her expectations.

In the early weeks of Alicia’s pregnancy she suffered terrible acid reflux. This was largely due to her stomach lining being damaged from the excessive amounts of drugs she had taken while battling the Wegener’s Granulomatosis. Even though she was no longer taking as much medication, the damage was done, and Alicia had to continue to take Lansoprazole otherwise she would suffer reflux. This was especially true if she ate white bread or rich food.

The midwife and Dr Kaura wanted Alicia to come off the Lansoprazole while she was pregnant. They wondered if Alicia could stop taking it altogether and see if her stomach had repaired itself in the last four years. 

Alicia was as sick as a dog for 10 days. She literally couldn’t eat anything without suffering painful reflux. That included things like brown bread, plain rice and vegetables. 

Eventually Alicia had to admit defeat and go back to her GP. He reluctantly prescribed her Omeprazole to deal with the acid.

Alicia had the normal 12 week scan which showed that baby was developing normally, if a little underweight. 

The second scan at 20 weeks showed the baby progressing nicely. At this stage Alicia began showing and she began to tell friends and colleagues at work.

Normally, mothers would have no further scans but Dr MacDougall began scanning Alicia every two weeks to keep an eye on baby’s development. He said that auto-immune disease sufferers can often have smaller babies, so they need to be monitored.

At the 12 and 20 week scans, the hospital took photographs of the foetus and allowed Alicia to buy them. Of course, Alicia bought several each time and gave them out to friends and family.

The later scans were supposed to be strictly functional but the sonographer often let us keep a memento from them too. Alicia’s baby must have been one of the most photographed in the North east before birth!

A major obstacle that Alicia knew she would have to overcome with the pregnancy was her throat dilatation operation. The scar tissue from the tracheal stenosis would increase over time and every five or six months Alicia would have to have the tissue removed by Mr Welch.

Alicia had had one operation in early September, just before she had fallen pregnant. The timing of that couldn’t have been any better, as it meant that Alicia got to six months before she needed a further operation. Baby was doing well. Alicia was still worried about the general anaesthetic. ‘Babies don’t like general anaesthetics,’ said Dr MacDougall. ‘They like mothers who can’t breathe even less.’

Alicia had heard lots of horror stories about pregnancy and anaesthetics but she felt that she was in safe hands with Mr Welch. The operation was one he had carried out on her many times before and it was quick. The only difference was that this time Alicia was carrying a passenger. 

If you went to find out what happened, you can check out the book on Amazon.