Hugo was born with a Bronchogenic Cyst. This was picked up at his 20 week gestation scan. It was touch and go if Hugo would survive as the cyst grew much quicker than he did in the womb. At around 33 weeks gestation the cyst gradually shrinks, and we were delighted to welcome Hugo with loving arms. 

At 11 months, Hugo had surgery to remove the golf ball size cyst from behind his Aorta. Three hours later and with very neat keyhole surgery, he was in recovery. We thought that this was the end of Hugo’s ordeal. Hugo’s post surgery appointment was great -  he had healed and recovered well. It was then that the consultant mentioned that Hugo has Pectus Excavatum. I noticed a dip but thought maybe I was overthinking things. We were advised that the hospital would review Hugo for possible surgery at the age of 14.  I was not able to find out much information regarding Pectus Excavatum, but I did find a wonderful Pectus Family Group on Facebook. This is where I began to learn about possible non-surgical options. 

Hugo has always been a very active child. At a young age Hugo suffered with breathlessness; walking the short distance home from nursery he would crouch down to catch his breath. His lips would turn blue even when stationary and he seemed to tire quickly.  It was through the Facebook group I learnt that swimming is a good exercise for those with Pectus Excavatum as well as it being a great life skill. At the age of 4, Hugo started his swimming lessons. 

My concerns about his shape worsened. I noticed that one side of his chest was sunken, his shoulders looked twisted. I did not expect to see such significant changes in him at the age of 5. Given Hugo’s medical history I requested a referral back to our consultant. He ordered a CT scan, this determined Hugo’s Haller Index as moderately severe pectus deformity with a Haller Index of 188/52 (3.6) at the age of 6. 

His heart is displaced on the right side of his chest. We were referred to: cardiology - who confirmed Hugo’s heart is strong and healthy; respiratory - who diagnosed Bronchial Malacia and we were also referred to a NHS surgeon in London.   

The Bronchial Malacia treatment is ongoing for Hugo as he has no muscle or cartilage in part of his bronchus. This means that Hugo struggles to breathe as part of his Bronchus collapses. There is air trapping and this is especially worse when Hugo exercises. Hugo’s case is complicated and we continue to receive ongoing care. 

At the referral appointment in London it was confirmed that Hugo was ‘Type 9’ Pectus Excavatum and Carinatum due to the twisting of his chest.  I asked about possible non-surgical options such as a brace, so we would only have the excavatum to deal with later on but it was understood that there is little room in his chest and as his heart is displaced this would not be a good idea. We did not expect surgery at the age of 7 but it was a great opportunity to be able to speak with someone regarding his PE, and this was our first opportunity. 

We left with mixed feelings, knowing something could be done but not until he was older.  Each week I could see his condition worsening. He was only 7.  I feared what he would be like the following year, or in 5 years time? I also worried about how we would finance surgery which was not NHS funded. What would the cost of the operation be in 10 years time when Hugo needed it? 

This appointment in London coincided with the Best Practice for Pectus event at the Royal College of Surgeons. We took Hugo along with us and I was grateful for the opportunity to meet and speak with others and learn from other peoples’ experiences. It was also great to show Hugo that he is not the only person dealing with this condition. I wasn’t sure what to expect, it opened my eyes to the harsh reality that the condition can be debilitating - it is not just cosmetic. It gave me hope and much more information than I could have imagined. 

We were referred to Mr Joel Dunning for an appointment. He then referred us to South Tees Hospital for non-surgical intervention. We were delighted to be able to get Hugo the equipment needed to help him.  At this appointment it was explained that wearing the vacuum bell takes commitment and a good mind set. It is a bit bulky and can leave slight redness on the skin temporarily. At the time Hugo was one of the youngest to receive the bell and due to the asymmetrical chest shape we were unsure if this was going to work. The wear time of the Vacuum Bell is increased over a short period and before you know it you put it on when you go to bed and it doesn’t interrupt daily life. 

Hugo has been wearing the bell religiously for just over a year. It has become part of the bedtime routine. We can see some amazing results, his dip is shallower and his shoulders look more even. It is less obvious that he has Pectus Excavatum when he wears his t-shirts now. Hugo still has a long way to go and the bell is definitely helping him. It was important to us that his chest shape didn’t worsen during growth spurts.   

Hugo swims twice a week and enjoys gymnastics and football. I have asked Hugo about sharing his story and he is very keen to help anyone with Pectus Excavatum and he definitely recommends the vacuum bell. 

We are very proud of Hugo and his resilience. Thank you to those who have helped us.