“For me, it’s a day at work, for the child it’s the rest of their life”

Great Ormond Street Hospital (GOSH) is situated in the heart of London and is the world's oldest children hospital (est. 1852) with the patronage of Queen Elisabeth herself. Today the hospital is considered an international centre for treatments of children’s diseases. 650 open heart surgeries on children were conducted last year under its roof.

GOSH’s vision is to be the leading children’s hospital in the world. More than a quarter of a million children passes through the hospital each year. They’re divided into close to 60 clinical fields, congenital heart disease being one of them, as well as undertaking extensive research.

Victor Tsang has been one of the principal surgeons at the Cardiothoracic Unit at GOSH for almost 20 years, and he is also Professor of Cardiac Surgery at University College London. In addition to operating children at GOSH, he operates adults with congenital heart defects at St Bartholomew`s Heart Centre in London and is connected to the private hospital, The Harley Street Clinic. Victor Tsang performs about 300 congenital heart surgical cases per year.

GOSH is a renowned hospital and in addition to the patients sent here from various hospitals in the world, they provide advice and guidance to other centres. They’re also often asked to give a second opinion of patients. When asked if they truly are leading in the world, Tsang doesn’t care too much about comparing themselves with others.

“GOSH really has outstanding experts in all fields. It’s a privilege to be a part of such a team. We use all resources to support our programs and have a genuine wish to help the children.”

Good survival

There’s a total of five surgeons operating children’s hearts at GOSH. They welcome children from all of England, Ireland and Scotland, but also from other countries in Europe and the Middle-East. Sometimes from Scandinavia.

“The pioneering surgeons at GOSH were amongst the first to operate on children with congenital heart disease here. Already in the early 60’s the “blue babies” were treated surgically with shunt,” he tells. Development was enormous in those years, and Tsang remarks how much the results have improved radically in the past decade.

“Today, 30-day survival is at 99 percent”, he says proudly. But he also emphases that this is a short-term goal and it speaks little about the prospects over time.

“We know that there are some challenges and comorbidity in the future for some of these children, especially those with the most serious diagnoses, and this is, of course, a major burden”, says Tsang. He sees many dilemmas: What is a severe heart defect? What is a life-threatening surgery? When to potentially not operate? Conversations with parents in advance of an operation is always given a high priority by Victor Tsang, as well as involvement in discussions about what can and should be done.

“If we can help and it’s the parents wish we’ll go to great lengths to operate and perform treatments, even when the prospects of a long life aren’t that good. For what is a long life? What is the measure of a good life? To be able to go to school? Parents have individual and personal answers to this, and a lot depends on the selected family’s philosophy of life. We have to respect this,” says Tsang and does not wish to reflect too much about the proportion of pregnancies that are terminated upon detection of serious heart defects. He’s often surprised of how well seriously ill children tackle life.

“We’re not here to judge!”

A good start

He emphasises how incredibly important it is that the very first treatment is the right one.

“The first surgery creates the platform for the child’s future development.”

Early diagnosis has great importance for the further outcome and Tsang sees valuable profit in discovering heart defects already during the pregnancy. This enables the hospital to start planning what treatments and operations the child will need; you also avoid emergency surgery where the operation needs to be done with limited preparation time.  However, Tsang points out that it in England, as it is in Norway, varies how often heart defects are discovered from ultrasound during the pregnancy and that there are quite significant social differences in this field.

A duty of honesty

‘Hjertebarnet’ meets Victor Tsang on a normal day at work at GOSH. He greets us outside one of the operation rooms. A hectic, but welcoming man. He has two operations on his agenda of the day, an arterial switch operation and a repair of a very tight coarctation in a small sick baby. They are squeezed in between interdisciplinary meetings with the rest of the team in which all patients are discussed, paperwork and conversations with parents. He always communicates with parents both before and after an operation.

It’s a determent yet humble surgeon who speaks of his everyday life as a life saver.

“For me, it’s a day at work, for the child it’s the rest of their life. It’s a great responsibility.”

He sees it as his duty, to be honest when informing the parents. “Any heart operation is dangerous, but we happened to be rather good at it”, is some of what he conveys. It’s important for him to be direct and sincere, but in the same time he wishes to offer hope, there’s always something to hold on to.

The day's first operation is a repair and an anastomosis of an aortic coarctation. The heart defect wasn’t discovered during the pregnancy and the mother and child had left the hospital, unaware something was wrong. This was her third child and the mother noticed that something wasn’t right after arrival at home. The midwife at the health centre reacted as well. Five days old, and the girl is operated at GOSH.

“This time it was «the mother`s eye» that discovered the heart defect,” the anaesthetist notes.

The operation hall is quiet, the only sound is hushed conversations between the surgeons and operation nurses. Assistants provide the team with equipment and other necessities, an anaesthetist is monitoring the child, who is connected to a breathing machine, making sure of circulation and exchange of oxygen to the blood and that it is safe in narcosis and getting enough oxygen.

We follow the procedure on the screen; the incision that cuts away the compacted area of the aorta, and the two new openings that are sewn neatly together afterwards. The operation takes just under two hours. After the child is to be handed over to the ICU for postoperative care.

In safe hands

Tsang boasts about his team, of everyone who does the preparations and after work of the procedure and that makes sure he can apply all of his resources to his field of expertise; operating.

“We are like a Formula 1-team,” the assistant surgeon comments, who’s following the child over to the ICU. It swarms of doctors, nurses, child nurses and administrative staff around the bed of the newly operated girl. They all have designated jobs and hand over the necessary information about the child's situation with expert authority and confidence.

The child stays at this post until she is stable enough to be transferred. Then she will be followed up at the hospital where the family lives. Only the most serious cases are followed up at GOSH the first year. Tsang would prefer if more of the patients could be monitored over longer periods at GOSH, but there are capacity constraints that make this hard. He believes, moreover, that local follow-ups are good for the family.

Heart transplantation

Annually approximately 25 heart transplants are performed at GOSH, from the youngest children up to the ones aged 18 years. They have good results. In England, as elsewhere in the world, lack of donors is a challenge. Which is one of the reasons they have gone almost completely away from combined heart-lung transplants at GOSH.

“Given the organ situation, it is almost unethical to use two organs on one person,” argues Tsang.

There is often long waiting list for heart donors and at GOSH they make use of different pumps as "bridges" to transplantation, for example, the Berlin Heart, but also other types of pumps.

“The situation is very different today than ten years ago, due to the use of mechanical heart pumps. These allow patients to get far less sick while waiting for a new heart, and it assists them to better accept the new organ. We reduce "waste of organs" with these pumps.”

A part of Espoir

GOSH is one of eight leading hospitals in Europe to participate in the study on decellularised pulmonic homograft valve (from another human being). Seven children from the hospital are partaking and have had the new valve inserted by Tsang himself. He points out that the material is good to use and is reminiscent of a conventional homograft. Tsang thinks this project is incredibly interesting, and have faith in the quality of the design and that it is organised as a multi-center study. That as many as 120 children are included makes sure the total is representative, and he thinks we eventually will be able to see results.

“The freedom of not having to re-operate on children will be wonderful,” he says and emphasises that the potential immunological benefits of the decellularised homograft valves if proven, are great.

The aim is that the valve becomes a natural part of the child's body and may grow with your child.

“With a model like this, almost without any other DNA than the child's own, the likelihood of rejection is small,” he says optimistically. He also stresses that with these, as with other valves inserted, accurate surgery is immeasurably important.

“At least five years must elapse before one can really say anything about how a new valve will work. Moreover, the lack of donor valves, especially for the youngest, is a challenge. In addition, it is expensive to prepare these decellularised homograft valves,” he says, while curiously awaiting the results. The ultimate long-term goal, according to him, would be if we could create autologous valves (made with material from the person's own body).

“However, the lack of a functional platform for the experimental human valve to develop is, and will remain a major challenge.”

By: Hanni Petersen

Translation: Hedvig Winsvold

Website The Norwegian Association for Children with Congenital Heart Disease

Description in English