Freya Molly Anne Martin- May 21st 2010 18.49pm
We have been very lucky to be blessed with a very healthy boy Winston Harry James Martin who was born on the 7th of May 2008, He is the one who has kept us strong throughout this hard time. Myself and my partner Bev decided it was time he had a little brother or sister so we started to try for another baby. After a very unfortunate miscarriage at four months we were lucky enough to fall pregnant again with Freya, we were of course delighted but obviously apprehensive after the previous miscarriage.
We went for our normal twenty week scan at Kettering General Hospital blissfully unaware that there was anything wrong. During the scan I can remember asking the midwife if everything was OK and in return she told me in a very stern voice that she needed silence so she could concentrate so we sat there in silence for what seemed a lifetime, we both held each other’s hands so tight. The midwifes voice seemed to soften as she told us that she needed to get a second opinion as there seemed to be something not right with our scan. We were put in a quiet room while they sorted out another scan, both of us were in a state of shock thinking what was going on?
We were then sent upstairs to see a specialist who gave Bev a detailed scan and confirmed that there was a problem. She told us that Freya had CDH (something we had never heard of) and we would be transferred to the John Radcliffe hospital in Oxford as soon as possible, we went home and rang our families and told them what we had been told and after mothers and sisters researching CDH on the internet we started to have more of an understanding of what we were dealing with and having to face up to.
We waited at home for the phone call from Oxford it came within a few days ,we just wanted to get there and find out what was wrong with our little girl. When we arrived at Oxford they started with some normal procedure scans then Bev had an amnio which tests for Down’s Syndrome plus would our baby have any disabilities etc this would show if Freya’s chromosomes were abnormal or not. We returned home and had to wait a few more days for the results which came back all clear. We were called back to Oxford to discuss our options and to let us know more about CDH. We were once again put in a quiet room (we seemed to spend so much time in these rooms now) and some specialists came in and spoke to us. They had to ask us if we wanted to terminate our pregnancy as they thought that her chances were 50/50 but could not guarantee this.
I can remember both of us sitting in silence and then looking into each other eyes and saying we wanted to fight for our little girl and fight we did any chance they were giving her is a better chance than terminating as being parents already to Harry this was never an option to us. This started a course of many appointments at the John Radcliffe hospital and with each appointment we were given more bad news. At first they thought that only her stomach had moved up into her chest but after more detailed scans they decided that they thought her liver had also gone up there. We started to dread going as every time we went they seemed to have more bad news for us .They decided that we needed to see a heart specialist as Freya’s heart also looked to of suffered because of her CDH. After some more scans and tests they told us that it was a very server case of Left sided CDH and they were predicting her chances of survival were as little as 10-20%.They decided to give Bev an MRI scan which they were hoping they would be able to see her heart and lungs in more detail. We returned the next week for the diagnosis and for the first time they gave us some fantastic news. They said that they thought Freya’s lungs looked ok though a bit small and her heart could be fixed with a simple operation.
We came away full of hope as her chances of survival had shot up to 80%, we were still very anxious but we still had to get Freya to the end of the pregnancy. We were told at the beginning that not all babies in pregnancies with CDH make it to full term so all Bev concentrated on was looking after herself and to get Freya to delivery, anything after that was in the hands of the hospital and God.
We were booked in for a planned caesarean on the Monday (39 weeks) we were both so excited that we were going to meet our little girl but also so scared as this was the time that she really had to fight to stand a chance. So off we went Monday morning very early 5.30 am leaving Harry at Bev’s parents, we were very lucky that they had him every time we went to hospital as we didn’t want to take him with us as we had to focus on our little girl and didn’t want him to see his Mummy and Daddy get upset or have any understanding of what we were having to go through.
When we were settled in we were told we would be going through in the morning so we waited and waited then unfortunately we were told today was not the day as they didn’t have enough room in the special baby care unit and they were going to try again tomorrow fingers crossed. I had booked into a local bed and breakfast so I could be close to Bev as we live two hours away from Oxford in Market Harborough. The next day we woke early Bev not eating again in preparation for the op and again were told it was not going to happen but we would try again Wednesday so again we woke early Bev still not eating. This is when they said they didn’t think it was going to happen this week and as they were still full in the special baby care unit we were told that Freya would be OK to wait a few more days. They did offer to transfer us to another hospital but this is something we really didn’t want to do as we had built a relationship with all the staff at the John Radcliffe and we trusted them100% to look after us all.
We were told that if we wanted to stay in hospital and wait for there to be a slot we could. We just wanted to stay as we both felt safe being there, Bev had got her this far and we just wanted to make sure she was OK. They decided that as we were there we should have another scan on the Friday just to make sure everything was alright. When we went for the scan Doctor Impey (an amazing specialist who looked after us all the way through) asked if Bev had eaten yet that day and she had only had a couple of grapes this meant it was going to happen today so we were sent back to the room to get ready we were both excited but also so very scared.
We were sent down stairs to wait and were told it would be 30 minutes (2 hours later) Bev was taken through and I was told I could go through in 30 minutes to be with her during the operation. We had already been told what would happen in the operating theatre, as soon as they got Freya out there would be a team of specialists waiting to whisk her away and to start work on her breathing, they also warned us that we wouldn’t hear her cry.
She was born very quickly and was immediately taken to the corner of the room, there were six or seven specialists waiting for her, they worked on her for what seemed like a lifetime then they said that she was stable but they had to get her into the special baby care unit. They brought her over to us wrapped in a foil blanket so we could see our little girl and wow she was the spitting image of Harry when he was born. Bev was then sewn up and taken to the recovery room. We were told that I was going to be able to go through and see her in a little while but the doctor came through and told us that they were having problems.
After about an hour they let me go through and there she was in special bed with machines all around her and tubes all over her. They had managed to stable her condition and she did look so peaceful like she was asleep. They talked me through what they were doing to her I must admit it was all a blur as there was so much to take in. They said she wasn’t taking to the oxygen but they still had lots of thing they wanted to try out.
A short time later they said that if Bev could get out of bed she could go and see her. The nurses gave Bev some more morphine and she somehow managed to get herself out of her bed (I am still amazed and so proud of her for doing this only 3 hours after her operation but nothing was going to stop her seeing her little girl). We wheeled Bev through and we sat with Freya for a while. We were not allowed to stroke her because they didn’t want us to stimulate her body but we could place our fingers on her skin to let her know that Mummy and Daddy were there, her eyes were open but glazed but I know she could hear us. They then dropped the bombshell that she may not make it through the night as her condition was not getting any better. We tried to get some sleep that night and the nurses kindly put me up in the hospital so we could be close. We woke in the morning and went straight down to be at her side, they were still trying very hard to sort out her breathing and told us that if we wanted to we could have Freya blessed so we did. Also if we wanted our families to meet her we should ring them. Within a few hours all our immediate family arrived and gathered on the park outside the hospital and in pairs I took all our family to meet our little girl, we didn’t take Harry in as we felt he was too little.
Harry being the entertainer he is kept everyone’s spirits up as he thought everyone was there for him. After everyone had met Freya they left us to go back and be with our little girl she was still very poorly but the doctors seemed to be more optimistic. The hospital had put us together in a special family bereavement room so we could be together. We went back to our room and that night we had a strange feeling that we must stay close to her. We then got the call that we must get down to her immediately as she was very sick. When we arrived they took us straight through and they explained there was nothing more they could do for our little girl and she was deteriorating very quickly. I remember sobbing like a child and Bev did the motherly role of making sure Freya didn’t hear us panicking and we have to keep calm and put Freya to bed. They took all of her tubes off and lifted her out so we could hold her in our arms. By this time we were both quiet and very frightened but kept it together.
As we held her tight they told us that she was starting to pass away, they removed the tubes so that we could hold her close. We were then taken into a quiet room and they brought Freya through to us wrapped in a blanket , she had come to life as her skin felt lovely and she curled her fingers around ours, we told her how much we loved her and we kissed her gently . As she passed away we both felt an enormous surge of her short life and love pass through our bodies a very strange experience.
We then knew we had done everything we could to have given her a chance but she couldn’t fight anymore. We feel very privileged that we had that very special time with her which will stay with us both forever, also that our families met her too. We cannot thank the hospital enough for everything they did for us and our little girl they are all such amazing people.
On the Monday we had to do Freya’s birth and death certificates, then when leaving the hospital we had to collect her bits and pieces, the hardest part was when we left the hospital we had to leave Freya there. The next week was a daze but we managed to organise and have Freya buried in a very small village called Mowsley which is where my family originates from. It was the hardest days of our lives but we got though it with the love and support of our family and friends, we all wore something pink and we asked for donations back to the hospital rather than flowers. We managed to raise over £600 for the charity SSNAP and we have also donated all the baby equipment that we saved from Harry for Freya and they are going to sell these things to raise money for the charity. We try to go and see Freya once a week but know she is with us all the time, Bev does little things in the house which helps us, pink flowers, pink candles and we have just started seeing a counsellor once a month together. There isn’t a day or a second that goes by that we don’t miss our little angel and some days we feel that we can’t get through this but with the love and support of our family and our beautiful little boy we will. From the first day of our 20 week scan to today myself and Bev are stronger than we have ever been and love each other deeply I am very proud of her and I know she is very proud of me, when one of us is down the other is strong, this is true love and we couldn’t get through each day without each other, it’s very hard and you have angry days but you can’t be bitter and twisted, God took Freya from us because not only did she have a case of CDH they said she had it one in a million and would have been very poorly and in a lot of pain, no matter how much we want her to be here we wouldn’t have wanted her to go through that. We dedicate Freya’s journey to all the parents and families that are going through a similar situation. Please stay strong you will get through this with the love and support of each other.
Rest in peace Freya Molly Anne Martin, she will always be the brightest star in the sky xxxxxx