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Patient stories

 

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Patient stories

With over 1,000 babies born following PGD at Guy's Hospital, we take immense pride when each child is born following a successful PGD cycle. These families describe what their experience with PGD AT Guy's Hospital was like for them.

Your feedback is very important to us as it helps us maintain the high levels of service and satisfaction we provide to you. Please talk to us if you are unhappy with any aspect of your PGD treatment. We will do everything possible to put things right.

Christina and Joel

christina-and-joelIn 2017 I married my husband Joel, and we decided that we wanted to start a family. I was born with facioscapulohumeral muscular dystrophy and there was a 50% chance that we would pass this condition on to any children conceived naturally. Given that it is difficult to predict the severity of the condition that we may pass on, we chose to start our family through PGD.

It has been an amazing journey but definitely not an easy route. PGD is not a quick process, it took us 15 months from initial referral to first embryo implantation. For me, this was the biggest challenge, trying to be patient and manage my desire to become a mum. Keeping busy definitely helped and picturing a time when I would hold my baby in my arms.

The injections to increase egg production can be daunting. My husband stepped in though and managed these for me, which helped enormously, it was teamwork. The egg collection process went well and we had 26 eggs collected. However, only six embryos survived the initial growth period and out of that, three could be transferred. I remember when we were told this that I felt some worry at such a reduction but tried to remain positive. Our first embryo transfer was unsuccessful, which I did find very hard but the team at Guy's and St Thomas' were very supportive, answering all our questions. Then our second embryo transfer was successful, which was an incredible feeling. We welcomed our daughter Ella into the world on 7 May 2020.

I can't thank the team at Guy's and St Thomas' enough for their guidance throughout this process and ultimately giving us the greatest gift of them all - a beautiful baby. For other couples considering PGD, I would say patience and communicating with your partner are key and when things are difficult, keep picturing the end goal.

Natalie and Chris

emily pantling

In all honesty it took me a long time to convince myself that PGD was the right thing to do. Chris, my lovely other half, carries the gene for Huntington's disease so it was really the only option that we felt was sensible in order to have a happy and healthy baby in the long run. If we had a natural birth, there would be a 50/50 chance that our baby would get this disease so it wasn’t worth the risk. I don't want to create a picture that is all sunshines and rainbows, because before speaking with anyone at Guy's, it looked like a pretty scary journey that we were embarking upon, however, I knew we were in this together and I think it’s important that partners recognise that it is definitely something you have to do together. You both need that support system from each other. Yes, the men need a support system too. This can be quite a lonely time, and many people that are close to you will be supportive, but they won't understand the realities of PGD, so make sure you communicate with your partners and lean on one another when it’s hard, because it will be hard at times.

The whole process took roughly one year, to be referred, etc. During the egg collection in February 2019, they collected 17 eggs, so at the time I felt very hopeful that we would get something from that. Guy's contacted us about a month later to tell us that two of the eggs would be suitable for testing, which felt disappointing but we didn't want to give up hope. We had two. We had one of the eggs transferred around May 2019 which didn't succeed and then in August 2019 we had our last embryo transfer, which was successful. We now have our beautiful baby girl, Emily. She was definitely a fighter. She was born on 4 May 2020.

From start to finish the doctors and nurses at Guy's Hospital were nothing but helpful, informative and supportive every step of the way, they all deserve medals. We still can't believe how lucky we are to have her here with us. If you are worried or have concerns about PGD, I would highly recommend just talking to someone there and have your questions written down. I can't stress how worried I was about the whole process, but if you are in a situation where PGD is your only option I would strongly recommend Guy’s Hospital. I had such a brilliant experience and each stage you get through is a step closer to having a beautiful baby. I can’t wait to tell Emily all about her entrance into the world (along with being born during COVID-19) and it feels so good to have eliminated this disease from her life, so we really feel like we have created something very positive from this whole experience.

Elena and Nick

elena-and-nickI was born with neurofibromatosis type 1. I have been lucky and am only mildly affected by the condition. In 2016, I married Nick and we wanted to start a family. We decided that we did not want to take the 50% chance of passing NF1 on to a child. So, with the help of Guy's Hospital, we decided to try preimplantation genetic diagnosis.

The first stage involved multiple appointments, forms and tests and starting injections to increase egg production. Initially the injections were scary, but we soon got into a rhythm with Nick doing them for me. The onslaught of hormones meant that my emotions were up and down, however, I was distracted by the arrival of our puppy who seemingly sent my ovaries into overdrive. I ended up having 29 eggs extracted and 14 of those were fertilised and sent off to be biopsied. I was sedated for the extraction and felt quite sore for a few days, but it was manageable.

After six months, we learnt that ten embryos were tested and four did not carry NF1 and were suitable for implantation. An amazing result, we were thrilled. The second stage was to start the medication for the embryo transfer and have regular scans. This included a nasal spray, hormone patches and pills. The most memorable side effect was unbelievably itchy skin.

Then I was ready for the transfer. It all took place in a sci-fi like room and everything seemed a little unreal, we met our embryo – apparently somewhere in a long thin tube. The head consultant came in and the process was all over in flash. It was uncomfortable but no worse than a smear test.

Following the transfer, we had a two week wait before taking a pregnancy test. This was tough but we tried to relax and not over think it. It was not easy and there were some scary moments when I thought it was all over. I woke up at 6am on the morning of the test and it was positive. I couldn't believe it, we were in a state of shock, the last year of appointments, tests and medications all leading us here.

Our daughter Evie was born on 5 February 2019. She is extremely happy, healthy and quite a handful now as she approaches her first birthday. I am incredibly grateful for the brilliant team at Guy's, both in the assisted conception unit and the NF clinic.

Before we started the PGD process we were nervous, aware of the success rates and how tough it can be. We were lucky it worked on the first attempt. The process was hard from managing expectations, appointments, medication and its side effects to riding a roller coaster of hormones and uncertainty. However, it was also an incredible journey. The science behind it is extraordinary as is the care available. The process brought us closer together, we were relaxed, supporting each other, trying to inject fun into each hospital visit and taking the time to sit down and chat. My top tips would be not to obsess over statistics, avoid online chat groups and Google dives, write your questions down, keep busy, don’t let the process consume you but take the time to look after each other, relax and keep everything crossed, it might just work. 

Other stories

  • Michelle and Russell

    Lila Saunders

    Michelle and Russell consider themselves extremely lucky that PGD was successful first time for them. Without treatment there was a 50/50 chance that their child would have neurofibromatosis 1.

    At first they questioned if this was the right way to start a family, but after much discussion they both agreed it was.

    They found the treatment easier than first thought and they found the most difficult part was waiting for the phone call to tell them if and how many healthy embryos there may be to use. They only had the one, but she was a fighter and they now have a beautiful daughter Lila. Michelle and Russell will remain ever grateful for what everyone has done for them.

  • Verginiya and Angel

    Verginiya and Angel Gutova with their daughter AnnaVerginiya and Angel desperately wanted to start a family but a family history of polycystic kidney disease on the husband’s side never gave them piece of mind. The chances of their child having the disease was 50\50 and they did not want to take the risk.

    Verginiya and Angel began researching on how they could have a healthy baby and spoke to their GP. They were referred to a genetic consultant who explained all the options available. One of them was PGD. After the consultant explained it in detail they immediately knew they wanted to proceed. As the couple were unable to afford PGD they were interviewed in order to be approved for NHS funding.

    Verginita said "the day of the interview came and we met our lovely and so amazing genetic counsellor. At the end of the interview she told us we were approved and we couldn’t believe it. It was happening. One year later my cycle started and our beautiful and healthy baby daughter, Anna came to the world on December 25 2015. Our dream came true and we couldn’t be happier. We can’t thank all of the PGD team in Guy’s and St Thomas Hospital enough for all of their efforts and hard work to make this miracle happen."

  • Michael and Emma

    One couple who have been helped by the centre are Michael and Emma from Wiltshire. Michael and their son Joshua are both affected with neurofibromatosis type 1(NF1), a condition that can cause multiple tumours in different parts of the body possibly leading to complications in the eye or spinal cord, and in rare circumstances can become malignant. Some children will also have learning difficulties.

    Emma said "neurofibromatosis is a bit like a lottery as you have a 50 per cent chance of passing it on and due to its varying nature, it is impossible to predict how severe the effects will be.

    "When we were told that NF was on the list of conditions accepted for PGD, we were ecstatic, and applied for PGD funding.

    "We started the course with some trepidation, not knowing what to expect, or how far through the process we would get. When the pregnancy test came back positive we were both over the moon."

    Nine months later, Emma gave birth to baby Oliver who weighed 7lb 7oz. She added "he is not only healthy but he is free from NF1 which is such a relief. The staff at Guy’s and St Thomas’ have been fantastic and we were looked after throughout the entire process. We only hope that many others are able to benefit from the same fantastic treatment in the future."

  • Manuela, Owen and Zara

    Some couples undergo PGD to help ensure they have a child unaffected by an X linked condition such as Duchenne muscular dystrophy.

    Duchenne muscular dystrophy is a severe life limiting condition and mainly affects boys who have symptoms from about two years of age. Many of the families we treat will have grown up with and cared for affected, brothers, uncles, cousins or nephews.

    Manuela Hayes recommends PGD to couples that have the worry of passing a genetic disease to their children.

    Manuela said "PGD was able to take away the scariest decision parents have to make, which is wh­ether to have a term­ination. Parents may have to face this decision when th­ey know their child will be afflicted wi­th a disease that will affect both the child’s quality and length of their life. Whiche­ver decision you make in that situation you are left with li­felong emotional sca­rs.

    "While going through PGD it felt like our PGD genetic counsellor was genuinely inves­ted in the process with us and regularly provided up­dates and informatio­n.

    "We felt supported th­rough the whole proc­ess, and the steps were explained in a way which enabled us to have a good unde­rstanding of them. This meant th­at we could make an informed choice of how to proceed.

    "We cannot thank the PGD team enough for helping us and for the wonde­rful daughter we got from the PGD proces­s."