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Wegener's and pregnancy
My wife Alicia was diagnosed with Wegener's in 2005 and had her first baby in 2013. I wrote a book about her experiences, and I thought I would share one of the chapters about her pregnancy on this forum as a few people have asked for more detail. I hope you find Alicia's story interesting and useful.
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 the Newcastle and the Northeast 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 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.
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 until 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.
At the end of the day Alicia had to have the operation in order to breathe so there was no point fretting over it. The operation was booked with Mr Welch and in the late February Alicia had it carried out. Alicia went in for another scan two days after the operation.
Mother and baby emerged from the operation fine.
Halfway through her pregnancy Alicia began to experience pain in her lower back and over her pubic bone. It was particularly painful when she walked up stairs, got into or out of the car and even when she turned over in bed.
Alicia spoke to her midwife about it and she referred Alicia to a physiotherapist. Alicia was diagnosed with Symphysis Pubis Dysfunction (SPD - sometimes called Pregnancy-Related Pelvic Girdle Pain PRGP). The physiotherapist told Alicia that SPD can affect around 1 in 5 pregnant women. It is a collection of uncomfortable symptoms which are caused by stiffness or misalignment of the pelvic joints.
The physiotherapist gave Alicia some exercises to do. Alicia was told to be as active as possible but to rest up when the pain got too much. This was especially difficult when she was at work, because she had to sit for prolonged periods when it would have been better for her to move around, or she had to get up and walk when she wanted to rest.
Alicia had to sleep on her side with a pillow between her knees. She was even told to consider walking up and down stairs backward.
The physiotherapist also gave Alicia a maternity support belt to wear. It proved to be incredibly impractical and gave little relief from Alicia’s symptoms. Alicia couldn’t drive while wearing the belt and she couldn’t disguise it under her work uniform either. Alicia gave up on the belt.
Fortunately for Alicia the pain from the SPD wasn’t constant. It came and went. She was used to dealing with pain and learned to manage the attacks.
As time drew on Dr MacDougall began to think more seriously about the delivery of Alicia’s baby. He had two main causes for concern.
The first was Alicia’s breathing. Labour is physically demanding, and painful, and if Alicia could only suck a quarter of the air in that a regular mother could, that could cause issues for both mother and baby.
The second issue was fatigue. Everyone gets tired during labour. One of Alicia’s closest friends was in labour for 36 hours and was physically and mentally exhausted by the time she gave birth. Due to the Wegener’s Disease Alicia suffers from fatigue. She finds it difficult to explain to people as they all get tired too and assume it is the same thing. The difference with Alicia is that once she hits the wall she simply can’t function. She can’t move, she can’t think. It’s like her body shuts down. What if Alicia had a prolonged labour and hit the wall?
The two options Alicia had to choose from regarding the delivery were a natural birth and a planned caesarian section.
Her concern regarding the natural birth was that Alicia might turn up at the delivery suite on any given day and be assigned a random midwife who didn’t really understand Alicia’s illness. If the midwife then tried to coax Alicia through the birth she might not understand about Alicia’s fatigue and try to push her through it. If Alicia’s breathing became a problem the whole delivery could spiral out of control. Of course the consultants were on hand should anything go wrong, but the lack of control was a worry.
There was also an issue regarding the epidural. This is an anaesthetic injected into the spine to numb the nerves and help the mother deal with the pain of childbirth. The amount of epidural anaesthetic injected during natural childbirth is greater than that used in a caesarian section. The doctors were concerned that the pressure would travel up Alicia’s spine and disturb the granuloma tissue sitting at the base of her skull.
The alternative was a planned caesarian section. This had its own potential problems in that it’s a major operation in itself and the recovery time is lengthy. Alicia wouldn’t even be able to pick up a kettle for a week and couldn’t drive for seven weeks. It was also exposing her body to further trauma and potential infections. The upside was that the date of birth would be known in advance and that meant all of the right people would be on hand on the day. However, 10% of all planned caesarian sections can’t take place on the planned day, so even this wasn’t guaranteed.
With pros and cons with each type of delivery Alicia held off making a decision until nearer the time. Similarly Dr MacDougall waited for Alicia to make the decision. With pros and cons with either delivery type, the consultants would generally be guided by the mother.
Alicia got the feeling that she was not the typical mother who would come into the hospital with a firm idea of how exactly she wanted to give birth. Alicia had had her plans dashed so many times in the past, she didn’t want to be disappointed again. She thought that the decision would ultimately be taken out of her hands so why build her hopes up in a particular direction?
Mr MacDougall wanted Alicia to give him a decision and Alicia wanted him to give her a clear direction on which method of delivery was safest.
He wrote to Dr Higgins regarding the epidural and the granuloma at the base of Alicia’s skull. Dr Higgins provided Dr MacDougall with an MRI of Alicia’s skull.
Alicia also had an appointment with Dr Higgins to talk it over. The consensus was that the epidural, whether given during natural childbirth or during a caesarian section, would not disturb the granuloma tissue in Alicia’s skull.
Dr MacDougall therefore concluded that Alicia should try for a natural labour.
In the event, Alicia’s hand was forced in another direction.
Alicia’s later scans showed that the baby had settled into a breech position. In the early weeks of pregnancy the baby can move around a lot and has quite a bit of space to position itself however it likes. As they move closer to the delivery date the baby usually moves into a head down position and stays there, and this is how the majority of babies are born in natural labour.
Alicia’s baby was bottom down and head up. In fact, baby was also sitting with legs up straight, like a diver performing a pike dive. Alicia had far more scans than normal over the last weeks of her pregnancy and in all but one scan baby was in breech position.
A natural labour for a baby in breech position would be far harder that childbirth with the baby in a head down position. That meant that Dr MacDougall recommended that Alicia now had a caesarian section, unless the baby could be turned. ‘There’s no way that you could have a breech baby naturally when you have Wegener’s Granulomatosis,’ he said.
Alicia had to attend the RVI for an ECV (External Cephalic Version). The doctors were going to try and turn the baby around 180 degrees so that Alicia could have a natural childbirth. If the procedure didn’t work Alicia would have to have a caesarian section.
The ECV got off to a poor start when the nurse asked if Alicia had had anything to eat that day. Alicia said yes, a light breakfast. The nurse went away to speak to a colleague. She came back with bad news. Alicia couldn’t have the ECV procedure that day. It was essential that she have an empty stomach before the procedure was attempted in case the baby became distressed and Alicia had to undergo an emergency caesarian. Alicia hadn’t been properly briefed about the procedure. The nurse gave Alicia a leaflet and rebooked the ECV for another day.
Alicia came back even more nervous than previously.
Alicia had to take some drugs called terbutaline in order to relax her uterus and make it more pliable for the procedure. The nurses carried out an ultrasound to confirm the foetus’s placement and where the amniotic fluid and placenta were located. Finally they began to monitor the baby’s heart rate to ensure it was not distressed.
Once all of that had been done, the nurse could then carry out the procedure. There is nothing technical about this part of the ECV. There is no ultra-expensive gadget involved. The nurse basically manipulates the baby through the mothers abdomen and tries to dislodge the baby and turn it around. Alicia’s nurse did this quite vigorously, at one stage bracing her knee on top of the bed, but she could not disengage baby’s buttocks from Alicia’s pelvis. Baby just wouldn’t budge.
The nurse gave it several tries but had to admit defeat. Alicia was left bruised and tender all over her tummy. Alicia had to remain in the hospital for a few hours while baby was monitored for signs of distress.
Baby remained in the breech position and Alicia was going to have a baby by planned caesarian section.
The date was set for Tuesday 4th June 2013.
Alicia was really struggling by this time. One reason was baby’s position. With bum down and head up, baby also had legs tucked up and feet above it’s own head. That meant that baby’s feet were poking into Alicia’s ribs and it made it very difficult for her to change position or to sit or lie comfortably. Sometimes, Alicia could see the baby’s foot creating a bump on her skin.
The other main reason was Alicia’s breathing. Although she had had the throat dilatation procedure relatively recently, Alicia was still having breathing difficulties. In part this was because of the extra weight she was carrying due to the pregnancy, but the main reason was one common to pregnant mothers to be in their third trimester.
Over the course of a pregnancy the hormones in the women’s body change. In particular women produce more progesterone, and that reduces the efficiency of her lungs to take in oxygen. It leads to breathlessness.
Alicia was also experiencing baby putting pressure on her diaphragm. This recedes a few weeks before the birth for most women as the baby positions itself lower in the pelvis but with Alicia’s baby sitting quite high with legs in the air, Alicia got no such relief.
It was also summer and the weather was getting hotter. Alicia struggled at night and could never get her body temperature right. She would constantly have night clothes on and off, sheets on and off.
Alicia was ready to have her baby.
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what an amazing, touching and inspiring story 
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