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On Saturday 18th September 2010 I was exactly 17 weeks pregnant when I received a letter telling me I was at a high risk of having a baby with Edwards Syndrome. I had never heard of it before. I thought the bloods that had been taken a week and a half previously were to check my risk for Down’s syndrome and Spina Bifida. I had no idea they checked anything else.  I went online to look up what I might be dealing with and initially couldn’t find any positives at all. All I found was negative information. I cried for hours.

On Tuesday 21st I had a hospital appointment. I was thinking that if my risk was around 1 in 200 I would probably have an amniocentesis, just to be sure, due to the severity of Edwards’ Syndrome. I didn’t expect them to tell me that my risk was greater than 1 in 5! They scanned me and said there was a possible clubfoot and clenched fist but it was difficult to see anything else at that stage. I had the amnio there and then. I wanted to remain positive but just had a feeling that things weren’t right. In a way I started mourning that evening.

The next afternoon the consultant called with my results and confirmed my baby had trisomy 18, Edwards’ syndrome, and invited me back in to the hospital the next morning to discuss my options. I was completely numb. I had carried out some more research online and had contacted a couple of T18 Mums who had continued with their pregnancies. I also joined a forum and made contact with women who had terminated for various medical reasons. Both options seemed as bad as each other and I can’t even begin to describe the weight I felt was upon me. I remember thinking, ‘How on earth can I continue, knowing that if my baby is born alive, it could suffer and I would have to watch it die anyway‘. On the other hand, how could I be the one to end this life and wonder ‘What if’ for the rest of my life?  I don’t have the religious beliefs that prevent many women from terminating and I was no longer with the Dad. Even though my Mum and friends were amazing, an impossible decision was made even harder because I didn’t have the support where I needed it most.

At the appointment I found out that I was carrying a boy and it was agreed that I would go ahead with my anomaly scan at 20 weeks to see if we could get a better idea of what he was facing. Even though I knew he had T18 and I knew the odds were against him, I couldn’t justify ending his life because of a possible clubfoot and clenched fist. It was only at this stage that I had a proper look at the SOFT UK website and contacted them by email. I got a lovely reply from Jenny who gave me contact details for Liz and Demi. She also sent me some booklets in the post. The information and support I received was amazing. 

People kept telling me that I would make the decision that was right for me but at the time I felt engulfed in a massive black cloud and couldn’t see a way out. The two weeks between the appointment and anomaly scan were horrible. I was willing my baby boy to die so that the decision would be taken out of my hands. It was during that time I started to feel him move and at that point, I decided that no matter what happened, he would be called Logan John Watson Graham. (John Watson Graham after my Dad who passed away in 2005).

On 8th October, when I was 19+6, I went for my anomaly scan. The scan showed a possible hole in his heart (VSD), suggested that his head wasn’t quite the shape it should be and confirmed the clenched fists. In all honesty I was half hoping that everything that could be wrong with him would show up on the scan and therefore make the decision to terminate easier. It was as though my head was saying termination was for the best, but my heart wouldn’t let me make the decision to do it. I felt as though I was having a constant battle with myself.

One decision that I had made from the minute Logan had received the diagnosis was that if I was going to terminate, it would be before 22 weeks. When a pregnancy is terminated after that point they have to inject the babies heart to stop it before the termination procedure takes place. This sounded horrific to me and I just couldn’t bear the thought of it. That said, I have since heard stories of people who were relieved that this took place because they knew their babies heart had stopped beforehand and it gave them comfort to know that they wouldn’t feel anything. I can totally appreciate that point of view, but it just wasn’t for me.

I explained all this to my consultant and said that I still didn’t feel any closer to knowing what I should do. She was great and not once did I feel pressured into making a decision by the staff in the Princess Royal Maternity in Glasgow. She suggested I go back in 10 days, on October 18th, when I would be 21+2 days so they could get a better look at his heart and give me a little more time to come to a decision. Up until this point, I would change my mind at least 10 times every day about what to do for the best. I had even written pros and cons lists for both options and honestly didn’t know how I would ever be able to choose.

Yet somehow in those 10 days between scans, the black fog lifted and I felt like a massive weight had been taken off my shoulders. My heart and my head were both telling me that I should continue with the pregnancy to give Logan a chance at life. Personally, I just didn’t want Logan to be another termination statistic. I figured if everyone terminated in these circumstances, how would people ever learn more about the condition. I decided to leave it up to fate and of course, Logan. 

I finally understood what everyone had meant when they had said I would make the decision that was right for me. I also learned that there really is no right or wrong under these circumstances.  Each person will eventually come to a decision that feels right for them. There were many times it could have gone either way for Logan and I.

When I arrived at the hospital for the next scan on 18th October, I was able to tell the Consultant that unless anything major showed up, I had decided to continue my pregnancy. As it turned out the scan was fairly positive. No VSD was detected, (of course I realised this didn’t mean there wasn’t one there), and no other problems were detected. I also talked to a paediatrician and he assured me that if Logan was delivered alive, all the care would be in place for him and he shouldn’t need to suffer. 

Shortly after this I was contacted by a charity in America called Sustaining Grace after another T18 Mum had given them my details. They offered to pay for a 3D/4D scan for me that I arranged through Baby Scanning in Glasgow. They were great and actually split my appointment into 3 sessions so I was able to witness Logan moving around, sucking his thumb and chewing at his cord at 24, 27 and almost 30 weeks. I will admit that before my experience with Logan I was rather narrow minded and I couldn’t understand why people got these scans done. Now I would highly recommend them to everyone as no-one knows what‘s around the corner.

When I was 25 weeks pregnant I attended the Scottish Soft Conference in Dunblane. I had been a bit apprehensive about going along on my own. To be honest, ‘conference’ conjured up pictures of people in suits with clipboards and I wasn’t sure what to expect. I needn’t have worried though because it was all very relaxed and informal. Everyone was so friendly and welcoming. It was great to be in a room full of people who had gone through similar.

Things progressed fairly well until a scan on Christmas Eve picked up that Logan had developed a congenital diaphragmatic hernia (CDH) and his stomach had been pushed up into his chest cavity.  CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity, which can prevent lung growth. 50% of babies diagnosed with CDH do not survive and that’s without taking any chromosome disorders into account.

I was told that if Logan was delivered alive, nothing would be done to stabilise him because it would only be beneficial if they were planning to operate to repair the hernia. This wasn’t going to be an option because it was assumed, he wouldn’t be strong enough for surgery. That was very hard to take. Knowing from the beginning that my baby was going to die at some point because of Edwards’ Syndrome was one thing. However, then learning that he was more likely to die because of another condition that wouldn’t be treated due to him having Edwards’ Syndrome was another thing I had to get my head round. I felt so helpless.

From then on, we were both monitored more regularly. During each scan I was amazed to see his heart beating away even although it was being slightly squashed and pushed over to the left side. I had been told I had polyhydramnios around the same time as the hernia was detected, but it didn’t seem to get any worse. I was lucky in that my blood pressure was fine, I didn’t have any swelling and no particular aches or pains.

I thoroughly enjoyed being pregnant. Logan was breech throughout and so because of that and to give him the best chance possible, I was booked in for a c-section on Tuesday 22nd February when I would be 39 weeks and 3 days. He had his last growth scan on Thursday 10th February and I was lucky enough to get a picture, which looked as though he was giving me a kiss!

I started getting cramps a couple of days later but they weren’t severe and didn’t worry me, I just assumed it was normal for being 38 weeks pregnant. However on the evening of Monday 14th February it suddenly dawned on me that I hadn’t felt a kicks for a day or two.

I called my midwife on Tuesday 15th and arranged to go in for her to listen with the Doppler. She was unable to find his heartbeat and so arranged for me to be scanned. What I already knew deep down was confirmed, Logan’s wee heart had stopped beating. Obviously I knew from the beginning that it could happen, but even knowing that can’t prepare you for it. I honestly believed because we were so close, that I would get to meet him alive.

As I had to be induced I was given my first tablet there and then and asked to come back in the next morning. I arrived at 9am and was given time to settle in along with some tea and toast before the procedure was started at 10:30am. Four pessaries and 12 hours later it was 10:30pm and not much was happening, I was only 1.5cms dilated. Everything happened pretty quickly after that though and Logan was delivered at 4:06am weighing 3lbs11oz. I didn’t think it was possible to experience a love like it.

The hospital staff were amazing and so compassionate and respectful. I was allowed as much time with Logan as I wanted and so some friends and family came to meet him and we had pictures taken.

I decided to have Logan’s funeral on 26th February because that was his due date. I had already picked some poems and songs beforehand so it was just a case of bringing it all together. Around 50 people came and I was very touched that both Demi and Liz were there to celebrate his short life. I have always been quite a positive person and so I tried to take every positive from my experience with Logan.

I am extremely thankful that I had the chance to carry such a fragile soul for 38 weeks. His existence has allowed me to meet so many wonderful people whose paths I may never have crossed otherwise. My life has changed for the better and I am so grateful to him for everything.


Created: 30/09/2020 11:55

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