Our Story – Abi, Paul and Ben
Paul and I met back in 2017 when I started working at RAF Henlow as a civilian contractor in the supply squadron. Paul was an RAF Sgt. Medic. He was the opposite of the type of men I had been with before. He was very shy and gentle. We became a couple in the middle of July 2018.
We had always said we wanted children but wanted to make sure we were in the right place financially and healthy to do so. I had to have half my thyroid removed in July of 2019. After this, I came off my contraception in the September and we started trying for a much-wanted baby.
By December of 2020, we still had not been successful getting pregnant, so we started fertility investigations. After both of us going through all the necessary tests, we were told that there was nothing of any concern about either of us, and it just had not happened for us yet. However, because I had had a hysterosalpingogram to check for any blockages of my fallopian tubes (which came back clear) because my fallopian tubes had been 'flushed' I would likely get pregnant very quickly. True to their word, I was pregnant that month!
No matter how long you try and how much you want a baby, it does not fully prepare you for that positive result. I was terrified! After the initial fear, we were both so very excited. We started preparing straight away. Buying things every week. Bottles, clothes, toys, monitor, stock piling food and nappies. We were 100% ready for our little one!
At 12 weeks, I was diagnosed with Gestational diabetes and was started on medication straight away. My results from my 12-week blood tests came back as low risk for all of the trisomy’s, Trisomy 13 was estimated to be a 1 in 21 000 chance. We breezed along the next few weeks until my 20-week anomaly scan. This also came back all clear for any anomalies and the scan showed we were having a little boy! We were thrilled!
My pregnancy was smooth with no sickness, and although I was on metformin and insulin for the diabetes, I had no side effects from the medication and the weeks were ticking by without any problems.
Because of the diabetes, we had extra scans booked in for 28, 32 and 36 weeks. At the 28 scan, our little boy was measuring small, only the 2nd centile, so we were referred to the Foetal Medicine department for a more in-depth scan for the following week.
At 29 weeks + 4 days we had the scan. The difference in the imaging from the hospital where had our other scans were like night and day. As Paul has a medical background, and I am very interested in human biology, we knew there was a problem straight away when the sonographer scanned our little lads’ kidneys. They were huge! Filling his abdomen! We were not concerned about his size anymore; we were terrified about his kidneys. We did not have a clue what this implied.
We were advised to have an amniocentesis that was booked for the following week when I was 30 weeks +1 day. We were told it would take 3 days for the results. We spent the next 3 days thinking positively and trying to get on with normal daily tasks. Then true to their word, they called exactly 3 days later. I remember cheerfully answering the phone. I was convinced that there was not a problem and that he would just need delivering early and his kidneys would be OK. Instead, our world came crashing down. Despite my 12-week bloods indicating that our little boy had a low risk just 1 in 21 000 chance of Trisomy 13, he did have the disorder.
We were invited back to the hospital that afternoon to discuss the diagnosis and ask any questions. Due to the size of his kidneys, we knew our precious son would be in excruciating pain if he managed to survive until term, and after having another scan, it was noted that one of his eyes was larger than the other and that his ears had not developed properly. It was highly likely our little boy would have been blind and deaf. We could not allow our little boy to spend even the shortest of moments on this earth in agonising pain and scared because he would not be able to see or hear.
We made the impossible and heart-breaking decision to have a TFMR. I was booked in for 3 days later. Then at exactly 31 weeks, our little angel, who we named Benjamin, was relieved of his pain and able to rest and sleep in my tummy. 2 days later, on February the 2nd, I was booked in at the hospital to be induced.
My labour was short and trouble free. Our gorgeous, perfect little boy was born at 4.12am on Thursday the 3rd of February weighing 3lbs 2oz. We spent the day with him. Holding him, kissing him, loving him. We said goodbye to him that evening, with our final goodbye at his funeral on the 1st of March.
We still cry most days, and scream and shout at how unfair it is. We also smile every time we think about him. He is the love of our lives, our greatest achievement, and our most wonderful, beautiful and proudest accomplishment.
There is guilt. We question if it was our fault that he had the condition, did we do the right thing by having a TFMR, but those feelings are natural. We have since been told that because of his kidneys, it was highly likely that Ben would have died inside me before he was able to be born. By having the TFMR, we did what we thought was right as parents to spare him any potential pain. Ben chose us to be his parents because he knew we would do that right thing, no matter how hard, to ensure he came into this world pain free and peaceful.
We say good morning to him every morning and tell him about our day when we go to bed every night. Paul and I are getting married at the end of July, and we will be acknowledging Ben every way we possibly can. Ben is my motivation for everything now. I owe it to him to talk about him, tell people about his condition, and raise money to support other families going through what are going through. He is my inspiration.
Abi Billham