Patient story

Susan Ferguson

I am a 40 year old Cardiothoracic Nurse and I work in Lancashire in the UK. I was born a "blue baby" and my mother was told that I would not survive past 11 years old. Very little was known about heart surgery in 1967. However, I have since proved them wrong. I qualified as a Registered General Nurse in 1991, married in 1995 and had two baby girls, one in 1997 and one in 2001. There is a four year gap between my girls because I was told not to have any more kids because of the strain that it would put on my heart.

Abi, my eldest, is perfect in every way. She is beautiful and healthy and makes me smile with pride whenever I think about her. After consultation with my Cardiologist, I went on to give birth to Charlotte, or Charlie, as she is affectionately known. Charlotte was fine, and we were allowed to take her home after a pediatric check.

All was well until Charlie’s nine month check-up. I stood with everything crossed, as you do. I was previously told that there was a 50/50 chance that she would inherit my condition of pulmonary stenosis and pulmonary hypertension. Then I heard the fateful words, "I can hear a murmur and it's too loud to be innocent. We need to refer her to a cardiologist.” Although worried, I assumed it was a minor blip and that she would do as well as I did.

Charlie appeared to be a normal healthy baby with very few problems until she was 14 months old. I was feeding her in bed when I heard her gurgle and she arrested in my arms. Luckily, I am in the right profession and I resuscitated her quickly. An angiogram confirmed that Charlie has supravalvular aortic stenosis and severe pulmonary artery hypertension. One pulmonary artery was 50% smaller than normal and the other 30% smaller. There was nothing they could do except fix the aortic stenosis when she was about four years old.

In December she suffered a further respiratory arrest, and then a cardiac arrest during which her heart stopped. Again, we resuscitated her. Subsequently, we had to make a decision: do we bring her very risky heart surgery forward, or take her home to arrest and possibly not be able to resuscitate her? We opted for surgery. She spent 2 weeks in the ICU at Alder Hey Children’s Hospital in Liverpool. She suffered from further arrests due to swelling around her heart, but after six weeks we brought her home. Subsequent test showed her PA pressure to be 87 mmHG at rest. She is on no medication at present, but she is monitored every three months. We were told there was nothing more to do except wait and see what happens.

Her cardiologist is excellent and she loves him dearly. Her three monthly Echoes make me smile as he gently wipes the gel on her chest and she sings the jelly on a plate song!! To know Charlie is to love her! I call her my little devil, because if there is mischief about, then she is in the middle of it stirring it up! She can run faster than me! She has a care person at school who follows on with oxygen just in case of an emergency, and we go into school yearly to update the teachers on pediatric resuscitation. She is proud of her scar, or zipper as she calls it, and tells everyone that she is special. People are surprised when I tell them how serious her condition is because she is so bubbly and normal.

As I kiss her off to school I always have the flickering thought, "I wonder if today will be the day she won't come home?" I know it is morbid, but for anyone with a child with this condition it is hard to understand the stress that we go through. We see life in days, weeks, and months; not years like I do for Abi. Charlie once told Abi that she was going to be a mummy when she was older like me. Abi's reply made me cry: “I don't think that will ever happen darling, because of your poorly tick tock. But don't worry. I'll do a Phoebe of friends and have one for you!"

Abi does tend to miss out because Charlie needs constant supervision, but she understands. The best advice that I can give to other parents is: Let your kid be who they want to be and do what they want to do because then you will know that they will be happy, fulfilled individuals with a sense of independence, and not just another statistic in a medical journal.

I am just starting to experience the symptoms of fatigue, low exercise tolerance, and chest pain, which are associated with PH. My biggest fear is whether or not I will be able to keep going for my children’s’ sake. I have a wonderful loving husband who is a great source of comfort, although I drive him crazy when I get tired and breathe through my nose!! I will let him know about this website, as the mention of all the medications and treatments that are available will cheer him up. I will be going to Manchester soon to meet a new Cardiologist who specializes in PH, and perhaps I, too, can start on some meds. I find the whole breathlessness thing very frustrating, as I am normally lively and never sit down. Thanks to all for your inspiring stories and I will keep you updated with Charlie’s progress.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.