Antenatal Diagnosis Posts

Google is not always your friend

Our pregnancy had been an emotional rollercoaster before we had reached the 20 week scan. With numerous episodes of bleeding, thoughts of miscarriage and A&E trips, we were quite relieved to reach 16 weeks pregnant in one piece. My job as a midwife meant that I was well versed in the realities of the 20 week anomaly scan. I was aware that the aim was to screen for major fetal abnormalities, and had spent much of my job suggesting that mums to be take a partner or friend with them for emotional support.

My husband came to the scan, and despite baby being in an awkward position, everything appeared normal. The only part the sonographer couldn’t scan in detail was the babys’ face due to its position, and so a repeat scan was booked for the following week. The time given to us was 9am, and I was due to be working a nightshift the night before. Traffic wasn’t great getting to the hospital so we decided that I would go to the scan by myself and then come back home afterwards to sleep. I went to the scan post night shift, not really thinking about much other than my desire to climb into bed. After quite a long silence- which didn’t unnerve me as I know the sonographers have to concentrate- she said that she was really sorry but there was something wrong with the baby’s face, and that she was going to get someone to talk things through with me. This turned out to be one of my colleagues who was superb at counselling me about the possibility of a cleft lip and palate, and the potential of any other associated syndromes.

My husband didn’t pick up his missed calls for about half an hour, by which point my tiredness and emotions had got the better of me. He had the awful phone call and subsequent journey to the hospital with the words ‘you need to come now, there’s something wrong with the baby.’ The same day we had a further scan by a consultant and referrals were made to a fetal medicine centre, where they would do more detailed scanning to try and determine a diagnosis.

After the scan and debrief, we packed a bag and went to stay with parents for a couple of days just to clear our heads. We’d been given some leaflets on cleft lip and palate but been advised not to google anything as this would probably not be helpful. I think the wait between the preliminary diagnosis and confirmation was probably the hardest. We were always quite open with people and would tell it how it was, but when you don’t know how extreme the anomaly could be, conversation always seems to end up quite gloomy.

Our friends were always good at keeping us in the moment, praying for what we needed at that time, which helped, as left to my thoughts I’d be trying imagine my baby at different stages of life and all the potential problems that may or may not arise.

Lots of further scans confirmed, as best they could, that our baby had a unilateral cleft lip and palate, and as its heart etc looked okay, it was probably an isolated condition. This meant that we could start to plan ahead, which certainly gave us time to think about what life would look like beyond birth. We knew that breastfeeding wouldn’t be possible, so it would have to involve expressing breastmilk or formula milk, and feeding with a squeezey bottle as the baby wouldn’t be able to suck. Nothing would have to be different with regards to the birth, but I was anxious about the first time we would see the baby. New babies aren’t always the most beautiful (!) and a large cleft on a small baby can be quite a dominating feature.

The pregnancy continued, slowly at times, but filled with specialist appointments, repeat scans, preparations and moving house. Due to the placenta not working effectively, I was induced just before 38 weeks pregnant. We’d shared our pregnancy journey with friends and family every step of the way, but chose to tell very few about the induction. I think in hindsight I didn’t want the pressure of people waiting for me to contact them!

The labour and birth were eventful but manageable, and Zachariah was born happy and healthy to a very tired mum and dad. The doctor who delivered him wasn’t aware before birth that Zach had a cleft, and then look of shock on his face will stay with me.

Reflecting on our journey, I think there are a couple of things that may be helpful:

  • Do talk about the diagnosis and ask questions
  • Be aware that although a diagnosis might be part of this baby, it doesn’t define them as a person
  • It might be helpful to provide a distraction for your friends, like going out for a meal, so that life can just be ‘normal’ again
  • Talk about what you can do to help and commit! And if they don’t know what you could do, revisit it when the baby arrives
  • Please don’t try and list all of your friends and acquaintances who have had babies with other antenatal diagnosis. It is not a competition and it is not helpful!
  • Take your lead from them as to how to learn more about the diagnosis. Google is not always your friend, and it may be upsetting to both you and them if you start quoting statistics and ‘research’.
  • If this is happening to you, I think its okay to experience a whole range of emotions. In a way, there can be an aspect of bereavement as some part of you mourns the loss of a healthy pregnancy. Being honest with what your feeling is helpful, and it also allows you to seek help either professionally or through a supportive friend/family network.