Join us as we celebrate Rare Disease Day 2022
” HHT? Never heard of this condition at all in my life until I ended up pregnant on my little girl Layla in 2011.
Pregnancy at the start was all normal. I had morning sickness that lasted 3 months but over-all my pregnancy was great until I woke up one summer morning in July 2011 to brush my teeth. I started to brush and all of a sudden lots and lots of blood started coming out of my mouth. Not just spilling, but actually spurting out onto the mirror in my bathroom and all over. As I ran to get towels to stop it, it just wouldn’t stop. I had to call my Aunty that morning to come up, while trying to explain while holding tea-towel in my mouth. She came inside house and her reaction was ‘ Has someone been murdered?’ as the blood was so bad!
She brought me to Wexford General Hospital where I was seen straight away. The doctors were very surprised and concerned with so much blood I filled in the car and the way I looked. At one stage I think I must have had about 5 doctors’ hands in my mouth while others were running around screaming at each other, while another doctor was on the phone trying to get some special mouthwash to help stop bleeding. I remember him saying ‘I have a girl 7 months pregnant bleeding out and we have no way stop it’.
There was so much going on around me I didn’t have time think. I just remember feeling very fatigued and had no energy to do or say anything. My Mam soon arrived and she got such a fright when she saw me. They told her when she arrived it is basically life or death as they had no idea how to stop the bleeding. After few hours in A&E they eventually got control of it and I was moved to the Labour ward while they were still ringing around various hospitals to try get an explanation of what was going on inside my body.
As I lost so much blood I was given a blood transfusion but because of this I started to go into labour so I was rushed to Waterford Regional Hospital and between the two hospitals I had 8-10 units of blood all together. Luckily enough Layla did not arrive and I had to stay in Waterford Regional Hospital until things were under control and they had to put plan into place for a possible labour. I also then formed a lump at the back of my ear that they were concerned about. I was scheduled in for C-section on 17th August. My due date was 23rd but because of this they recommended it was safer to bring me in and do C-section by local anaesthetic in case I started to bleed out.
Layla was born a healthy and happy weight of 8lbs1oz! After she was born I was undergoing a lot of scans and blood testing to see why I had such a bleed. I was still bleeding from my gums where I had the haemorrhage. I was then sent to St. James Hospital – to the Coagulation Centre where they discussed I might have a blood-vessel condition – HHT. I was very much all over the place emotional & mentally as I had to go back and forward for appointments in Dublin. Eventually they came to conclusion that I had HHT.
HHT is a genetic blood-vessel disorder which can affect many major organs. If HHT is suspected we should make appointment to visit our National HHT Centre in the Mercy University Hospital Cork by emailing the co-ordinator – firstname.lastname@example.org
So from this lump at the back of my ear they found a malformation. It doesn’t bleed but because of pressure (it had a massive pulse) it was like a heart in my ear! This pressure had me feeling sick and dizzy. Even walking or being in anyway active I would have to lie down until it would calm down.
I was then sent to a consultant in Hammersmith Hospital in London called Dr Jackson who performed 3 angiograms on me. He put glue in that area to stop the pulse which worked! I was able to do more active things without being in pain. The last angiogram he did was to put glue in my gums where telangiectases are that caused the bleed in first place.
It’s 2021 now, Layla is 10yrs old and I’m still attending St James’ Hospital in Dublin. In the last few months my pressure has come back in that area due to wisdom tooth being impacted, so therefore I’m undergoing more scans and angiograms before they decide to remove tooth as complications could arise. I recently had to leave my job as a beauty therapist due to pressure again in that area. It’s not as bad as it was in 2012 and other years, but I feel now it’s at me again and has stopped me doing my hobbies such as dancing. It has also stopped me from working. I am waiting for more MRI scans as these scans need to be done every 5 years to see if any more AVMs have formed around my body. Layla has also been having nosebleeds which is another sign for HHT , so she has been referred to Crumlin Hospital and is awaiting tests there.
There needs to be more awareness of this condition HHT as it can have a huge impact on your life, no matter how big or small, whether it’s nosebleeds or AVMs around the body . I think personally MRI scans and CT scans should be given to all age groups to detect any AVMs or other signs of HHT. I’m lucky to have Layla and I guess if I hadn’t been pregnant with her I wouldn’t have known I had HHT. I am forever grateful to all the staff in Wexford General and Waterford Regional Hospitals. I can’t thank St. James’ Hospital, Dublin enough for helping me detect HHT and for getting me the treatment I needed by the great consultant Dr Jackson in Hammersmith Hospital, London.
It’s such a pity that I had to travel to London to get the necessary treatment. Why was I not referred for treatment here in Ireland? We need to know where our HHT specialists are and we need our GPs to be able to refer us to them in a quick and timely manner.
I have been advised that if we contact our National HHT Centre in Cork – they will perform the necessary screening for HHT along-with the genetic blood testing. They will also be able to refer us to the relevant specialist here in Ireland for further treatment – depending on which organ(s) is affected.
I hope by sharing my HHT story, it will help others who are suffering also to get a prompt diagnosis & proper treatment.”