Up to now, my pregnancy was not half the drama I imagined it might be. Then the 20-week scan happened. Whilst the first half of my pregnancy was all plain sailing, the second was a whole different ball game.
I must admit that up to this point I had not fully understood the importance of the 20-week scan…
For those that don’t know, this scan is also known as the anomaly scan. It’s when the sonographer takes a closer look at your baby and the womb. They check that the baby and all its’ major organs, such as the brain, bones, kidneys, and stomach are developing normally.
Monday 18th March 2019: 20-week scan day
Dad, Sara and I meet up in Stoke Mandeville hospital car park and then off we go to waiting room B in the maternity ward. After a short wait I am called into one of the ultrasound rooms. Dad and Sara follow on behind and the sonographer is happy to be accommodating and allow both my observers into the ‘Pink Peanut’ viewing. We all settle in and I explain that my Dad is really interested to see the scan, and ask if she would talking us through as she carries out the procedure. The sonographer gives a very detailed explanation of all that we see; heart, brain, spine are all looking great and baby is looking a good size too. The only thing we don’t see is her stomach, so we’ll have to pop back next week to get that checked out.
Friday 22nd March 2019 – second and third 20 week scan day
I have managed to get a follow up scan today before I head off on holiday with Beth to Albania! Sara and Timothy are coming with me this time, as it should be a case of pop in, see stomach and off we go.
Sadly this turns out not to be the case at all…
We arrive at 11.20am ready for the scan to be squeezed in just before the end of the appointments at 11.30am and after a lot of waiting around we finally get to see someone just before 1pm. This lady does a very quick whip around the baby’s organs and then states quite bluntly; ‘Still no stomach to be seen today. I will need to arrange for you to be seen by a foetal medicine specialist. We will also need for you to have an amniocentesis test as soon as possible to check whether the baby has genetic or chromosomal abnormalities’.
With this statement, Sara and I have a hundred questions and, because it is the end of the morning scanning session, it seems there is no one available to answer any of them. In a moment of both frustration and fear I burst into tears, at which point we are bundled into a side room while they scramble to find someone to come and explain the next steps to us.
Timothy, my 2¾ year old nephew, looks at me with a sad face and asks me ‘Aunt Em is baby OK?’. Sara and I explain to him that they are not able to see the baby’s tummy. This leads to him questioning every single body part he can think of ‘Baby got arms? Baby got legs? Baby got fingers? Baby got toes?’. I simply say to him ‘Yes Timothy but baby got no tummy…’
A midwife is found for us to speak to and she explains that I will have to wait until Thursday of next week to have another scan in the foetal medicine department and for them to confirm exactly what will happen after that. They give me a leaflet about the amniocentesis test, which is when a needle is inserted into the uterus to take a sample of amniotic fluid, scarily this test carries a 1 in 100 chance of miscarriage.
We leave the hospital with our heads swirling; Sara drops me off at home as she needs to go on the school run to collect Esta. To say I am emotional is an understatement, I feel devastated, I need answers and I want them now…
I decide I need to get another opinion and preferably today, so walking through the front door I am straight on the phone to the fertility clinic in London explaining what is happening. Although they are not able to help me directly, they suggest I contact the London Ultrasound Centre who ask me if I can get in for a scan at 4pm today. It is already 2.30pm, however it should just be possible to get there on time!
Luckily I am due to meet up with Seema (a doctor friend) today. Having messaged her from the car on the way back from the hospital, she immediately jumped on the train to Berkhamsted to talk everything through and help me try and understand what the possible outcomes could be. I call to let her know the change of plan just as her train is arriving into Berkhamsted. We agree to meet at the station so that we can head into London and go for the ultrasound together.
Leaping off the train in Euston we jog slowly to the taxi rank and I shout breathlessly to the black cab to ‘take us to Harley Street’! We arrive at the appointment at 4.10pm, rushing through the door we are met with the news that the consultant is running approx. 45 mins late but will be able to see me today as long as we are OK to wait.
Seema agrees to stay with me and then does her best to distract me while we wait to go in. Once in to see the consultant, Seema really is amazing. She knows exactly what to ask, how to ask it and gathers all the relevant information on my behalf. My head is absolutely spinning. The only positive thing I hear the consultant say is that there really is nothing I can do for the next week and, given I already have the time off work and a holiday booked, why not go away?!
Once out of the consultation room having gathered so much information, I phone my sister and again became very emotional. Seema kindly takes over talking to Sara explaining exactly what we have found out:
The consultant has confirmed that, based on the ultrasound, there is an abnormality in ‘pink peanuts’ oesophagus (food pipe). During early development the oesophagus and the wind-pipe (trachea) begin as a single tube that divide into two adjacent passages and the oesophagus joins up with the stomach between 4-6 weeks of gestation. However in Peanuts case this appears not to have happened in the usual way.
Babies normally swallow amniotic fluid that surrounds them. Fluid shows up as black on the ultrasound and a stomach would usually show up as a black circle on the 20 week scan. Because Peanut’s tubes haven’t developed properly, there is no connection between her oesophagus and her stomach and so she isn’t able to swallow the amniotic fluid – that’s why we can’t see her stomach on the scan.
This condition is known as Oesophageal Atresia (OA) and occurs in just 1 in 3000-5000 newborns. Almost 90% of babies born with OA also have a trachea-oesophageal fistula (TOF). This is where the oesophagus and the trachea are abnormally connected, allowing fluids from the oesophagus to get into the airways. This only becomes a problem once the baby is born and so these babies need to be born in a hospital where they can have surgery soon after birth.
The main concern, however, is that in 60% of OA/TOF cases this issue occurs alongside other birth defects or as part of a genetic syndrome. The only way to test for the majority of these is to have an amniocentesis, so that the fluid can be sent off for further testing. This test is also not without risks, including miscarriage. In addition, it is likely that I will need to have repeat amniocentesis later in pregnancy as the condition is related to excess amniotic fluid which will need draining as it can cause risks to both mother and baby.
The result of all this information is that I have two options. I can either have, the amniocentesis within the next couple of weeks or I can wait until the fluid increases. Waiting until the fluid has accumulated means peanut would be closer to 30 weeks and therefore fully formed. This makes decisions about what to do if the result came back as showing a life threatening or severely disabling condition even harder…
As Seema and I walked towards Euston all I could think about was what should I do? The decision of whether to have the amniocentesis test felt huge, life changing and so scary. However, the decision to wait and, based on the result, potentially have to make the decision to terminate my pregnancy at 30 weeks or more felt completely unthinkable.
I had a week to consider, mull over and to try and relax all whilst driving around Albania – it was all as bizarre as it sounds (it really was one of the most random holidays I have ever been on). A week driving through some stunning scenery, chatting to locals and all with one of my best friends was indeed a good way to spend this time.
My thanks to Sara, Seema and the ‘wonderful women’ without your support this week would have been awful, you all made it more bearable. Special thanks go to Beth, your support means so much to me – bring on the next random adventure!!