Tommy's guest blog, 20/01/2017, by Leasa
Our team of researchers looking into stillbirth are currently investigating whether a certain drug (UDCA) given to mothers suffering from a common liver disorder, can help prevent stillbirth.
You can read more about this project here.
Here is Leasa's story
We are so pleased that Tommy’s is doing research into obstetric cholestasis (OC). We felt from the start that it was something no one knew anything about and doctors weren't overly keen to diagnose.
I started with itchy hands and feet (the main symptom of OC) about 18 weeks, but it wasn't diagnosed properly until 24 weeks.
Initially when I reported the itching my midwife referred me to the doctor for a blood test, but the results never went back to the midwife so we continued to go round in circles with the doctor who kept repeating blood tests and said the high results were nothing to worry about. They also kept stating OC is generally diagnosed in the third trimester at around 32-36 weeks.
At this point I was starting to get frustrated, the itching was getting worse and I felt something was wrong but according to doctors everything was fine. At around 24 weeks my midwife happened to look at my blood test results, she rang and asked me to go to the hospital straight away.
Panic set in.
On arrival at the maternity assessment unit, I was again told it would be unusual to develop OC this early on but blood tests were taken and due to high bile acid levels and ALT it was confirmed I had it.
I asked the nurses assessing me that day what OC was and what it meant for me and my baby but they didn't know a great deal and just said it may mean delivering early as there is a risk of stillbirth.
I was given cooling creams, antihistamines, and ursodeoxycholic acid (UDCA) initially but it soon became apparent that in my case OC was resistant to treatment.
The only real symptom is itching which becomes unbearable on a night time and it was gathering momentum at this point. I was also experiencing it during the day.
It doesn't sound a big deal but constantly itching with no remedy drives you to the edge of craziness. It was worse on a night so I didn't really get much sleep.
I slept with a bucket of freezing cold water by my bed and a fan pointed on my feet. When I woke itching I would put my hands and feet in the bucket till the cold numbed them and then try and get some sleep before they warmed up and started itching again.
It was debilitating, I was exhausted and an emotional wreck. I was aware the condition would disappear as soon as our baby was born so during those awful nights I remember hoping I would get induced early...I had no idea then what that meant for our little guy.
From around 27 weeks I had to attend the Maternity Assessment Unit every other day for tests. The itching didn't ease. I remember being so tired and fed up I was just going through the motions.
I was still working at this point so I didn't really have time to sit and think about how this could affect our baby.
Eventually at around 31+2 the consultant admitted me to hospital for continued monitoring with a view to inducing me within the week after a course of steroids to help develop my babies lungs.
Things started to become quite scary, I remember crying myself to sleep when my husband left me at the hospital that night.
During my stay in hospital, before the induction, we met the paediatric doctors who explained what could be wrong with our baby given my gestation, however he was a good weight and scans were fine so I didn't really think too much of it. They also arranged for us to have a look around the Special Care Baby Unit so if the worst did happen we would at least know what to expect.
Things started to get a little more scary.
I was induced at 31+5. My body was not ready and neither were we. Everything about it felt unnatural. It was a very slow and problem filled induction which ended with an emergency cesarean section, which wouldn't have been required if I didn't have OC.
Albert was born at 32 weeks (by half an hour!) weighing 4lb 12oz. He was born not breathing but they resuscitated him and transferred him to intensive care.
As I was put to sleep for the section I didn't see him till around 7 hours later. The first time I saw him was through the plastic of the incubator and it was another week before we got to hold him briefly. Even then he was very fragile.
He had meconium aspiration (which is something having OC vastly increases the chances of) and chronic lung disease. He could not breathe on his own and we were more or less told to expect the worst and asked if we would like to have him christened.
His right lung collapsed, then his left, and initially his kidneys didn't work without medication, he also required medication to maintain his blood pressure.
We spent a very hard 6 weeks in SCBU, it was a rollercoaster ride full of ups and downs.
I was adamant I wanted to breastfeed but it's very hard when you don't really have the magical bond you hear new mothers talk about. How could I bond with him when I couldn't hold him?
The nurses were brilliant and encouraged us to do as much as we could to develop that bond, like talking to him and reading to him.
I think initially we both felt a bit silly reading and chatting around other parents, nurses, and bleeping medical equipment especially when we didn't really feel like he even knew we were there. But it soon became second nature, along with late night trips to the hospital to say goodnight and timing our arrival the next day with that of the doctors’ rounds to hear what happened overnight and what their plans are for the day.
He was eventually allowed home, with oxygen. We were told in the first few weeks to stay home, I remember how excited I felt when I got a call from the nurse to say the consultant was happy for me to take him for a little walk outside in his pram.
He is now a happy, cheeky chappy at 9 months old, no longer on oxygen. We are still under a neonatal consultant and physio for check ups, but they are happy with his progress.
I would love to raise awareness for this condition. My consultant was brilliant but many do not really know a great deal about it.
It would be great if in severe cases like mine they could prolong the pregnancy somehow, and more importantly confirm exactly what about the condition causes stillbirth so doctors can further understand how to best manage these cases.
The scary thing is I know I'm more than likely going to have to go through it all again if we decide to have another baby.
I carried him for 17 weeks and went through all the symptoms and emotions. I won't forget him or act like he never happened.
'We're massively grateful and so appreciative that the clinic improved our pregnancy and certainly made it much easier for us'
Clayre and George had baby Lachlan thanks to the care of the Tommy's Metabolic Antenatal Clinic at the Edinburgh Royal Infirmary.
'Caroline and Jenny in EPAU were fantastic and became like family almost. They have seen me at my worst, at my lowest point and they were there supporting me and holding my hand the whole way, along with my husband.'
ALL of these people had experienced the same thing as me??
After trying for more than 20 years this is how it's going to end.
Miscarriage is taboo in many cultures, often hidden away, even a thing to be ashamed of. In fact, it is actually something that Islam teaches us very openly and beautifully about.
Pregnancy following a loss can feel very difficult. Sam from Storms and Rainbows writes about her experience of pregnancy after loss and recurrent miscarriage.
It was the loneliest 15 minutes of my life. I felt invisible. I witnessed couples coming and going from the rooms, with their scan pictures and beaming smiles.