The journey to our rainbow

Every time I stepped foot in the Rainbow Clinic for an appointment I was uneasy only because I didn’t know what they would find but they understood this.

Story of baby loss

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Story of #babyloss by Rebecca,

I would like to take the time to express my sincere gratitude to Professor Alex Heazell and the rainbow team at St Mary’s Hospital in Manchester, in light of my personal experience over the past three years. Please bear with me as I give a somewhat detailed account.

Unfortunately, I have suffered five miscarriages and a neonatal loss in the last seven years.

Our first daughter Grace was born 19th December 2014 and we had to make the heartbreaking decision to withdraw her care on 12th January 2015, since she was unable to breathe for herself caused by complications with her delivery and a possible antenatal issue.

Throughout my pregnancy with Grace, the hospital I was under assured me she was absolutely fine; we had several visits to the maternity assessment unit for ctg monitoring, which seemed to tell them she was fine but sadly, this was not the case when she was born.

In July 2015, I found out I was expecting again.

A normal mum-to-be is excited but I was filled with fear and anxiety. I couldn’t lose another baby, physically or mentally. At around 12 weeks, I heard about the Rainbow Clinic and my midwife suggested I self refer.

I managed to do this and I transferred my care to St. Mary’s and met with Alex for the first time at 16 weeks.

At the initial meeting, after just five minutes, I relaxed. I knew that I was in safe hands, that I would be looked after because he explained everything, he didn’t just pacify me.

He asked about Grace and about what had happened. More importantly, he (and his team) always referred to Grace by her first name and he assured me he would do everything he possibly could to ensure this baby was safe. He arranged for me to see Dr Bullen in Fetal Medicine so we could have our baby’s spinal cord checked, as we were told Grace’s hadn’t developed properly. We met twice with Dr Bullen, who then referred me for an MRI. The staff were making sure my baby was safe and well.

Every time I stepped foot in the Rainbow Clinic for an appointment I was uneasy only because I didn’t know what they would find but they understood this.

Each scan, they pointed out baby’s heartbeat straight away and explained everything: all the measurements, blood flow etc. I, of course, didn’t fully understand but they showed me the charts and tried to explain why everything was as it should be. All this took time but they didn’t mind.

The plan was to deliver at around 39 weeks, by c-section, due to my history with Grace.

At 37 weeks 5 days Alex noticed the fluid around my baby had decreased. He wasn’t overly concerned but he did ask me to come back the day after for another scan. We did and it had dropped significantly enough that Alex decided I needed admitting for monitoring and subsequently for an earlier delivery.

Our second beautiful daughter, our Rainbow Baby, Thea, was born on 29th February 2016 healthy and weighing 6lbs 7oz.

In March this year, I surprisingly found out I was expecting again. This time it felt different, I knew I wouldn’t go anywhere else other than to see Alex and his team again. I couldn’t and wouldn’t trust anyone else. I had my booking in with Louise and met with Alex again, whereupon we discussed my care plan. It was effectively the same as last time. However, I was absolutely blown away by how much they had progressed in two years. Louise was now effectively my midwife throughout and could also scan me from 28 weeks. Knowing I could contact Louise by phone or email and be able to see her relatively quickly just made me feel so safe again. It was nice that all the team remembered us from the last time. I didn’t have to explain in detail the reasons for my anxiety, they just simply took care of me.

This time I wanted to try and enjoy my pregnancy. I wanted a birth plan, I wanted to not be anxious and maybe be a 'normal
mum-to-be'. They allowed this, they were with us every step of the way. I was determined not to go to AAU for the slightest niggle. I completely trusted them and I knew, if I was worried at any point, I could contact them.

My baby’s movements, this time, had a pattern that I could predict every day. However, when I got to 36 weeks it changed. The movements had reduced a lot. I explained this to the team and although my scan appeared normal, they requested I had regular monitoring. We needed to make sure we had all the necessary information. At just over 37 weeks my fluid was reducing again but not enough to be overly concerned about; growth was still fine but with my history with both Grace and Thea, they wanted to keep an eye on me. I went back three days later and Alex reviewed everything. This time, there was hardly any fluid around my baby and he knew it was not worth taking the risk. I was admitted and he arranged for a CAT 3 emergency section but stated if my monitoring deteriorated then baby had to come out that same evening. I spent an hour on the CTG machine and the midwives agreed that the safest option was for my baby to be born that evening, as things were not improving.

I was prepped and ready to go for 8pm but, due to other emergencies, I didn’t go to theatre until midnight. Our beautiful baby boy, our second and final Rainbow Baby, Connor, was born at 01:12am on November 2nd.

Ten minutes after he was born, it became apparent something was wrong and they called for the paediatrician.

I hadn’t seen Connor and my husband hadn’t held him and in that moment, all the memories surrounding Grace’s birth came flooding back. I was told he had some mucus and he was struggling to breathe and required assistance. At this point, fear took over since I was told this with Grace. However, the surgeon who was looking after me could tell I was in distress and she calmly asked for someone to explain what was happening: she actually said, “I have a very upset 'rainbow' lady on my table who needs to know what it is happening with her baby.” Now I’m sure she would’ve done the same had it been for a 'normal mum' but in that moment, she made me feel better, acknowledged. I have since learned that the Rainbow Clinic have been working with the theatre staff and you can tell.

Everyone involved was truly amazing.

It turned out that Connor had developed a pneumothorax and he had to stay in NICU for a few days. The doctor treating him kept coming to see me, to keep me updated. She actually laughed and said he must have someone special looking after him - his chest drain and ventilator were both in by 2:00am but our son had ripped them out by 2:30am. That had Grace's spirit all over it!

I appreciate that this may seem long winded and there’s so so much more I want to say about my time with the Rainbow team but I would be writing a book!

However, to sum up, this team, this clinic, is very much needed.

In three years we have seen, first hand, how much they have grown and, simply put, Thea and Connor would not be here, had it not been for their care, their research, their time and their efforts and for that we will be eternally grateful. We often now think had this care been available when I was expecting Grace she may have made it, though I appreciate the Clinic is here for losses but in each case of my deliveries we have since been told things start to change from 36 weeks and had I had something similar our beautiful girl may have survived.

We cannot thank the Rainbow Team enough, they are truly wonderful people and so suited to their positions and I have my beautiful Rainbows because of them.

I do hope they continue to receive the support they need to help other families, not only do they help to allow families to bring home their Rainbow babies they can sometimes also offer closure and for families like ours it truly means the world.

With kindest regards,

Rebecca.

Rebecca Coles story submission

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Comments

Please note that these comments are monitored but not answered by Tommy’s. Please call your GP or maternity unit if you have concerns about your health or your baby’s health.
  • By Anne Edwards (not verified) on 5 Jan 2019 - 16:12

    Wow. Yes. All this. What an article. I am currently under their care and it has been amazing! They make me feel normal when all I feel is an anxious mess. They understand everything and are the big warm hug of reassurance we Rainbow families need. I’m sobbing at the thought of the care we’ve had. And I hope to soon meet the much longed for light of our Rainbow after the storm. X

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