A Christmas miracle: Step by dramatic step, how doctors performed open-heart surgery on baby Jessica just 20 minutes after she was born
10:13 GMT, 18 December 2012
Just 20 weeks into her pregnancy, Claire Muse, 31, a computer technician from Newcastle, was told that her unborn daughter had a serious heart defect.
A further scan revealed an even more dangerous complication, which meant that without surgery, Claire’s daughter, who she had named Jessica, would die within minutes of being born.
On July 16, little Jessica became one of the youngest babies to undergo the extremely complex operation required to save her life.
Fighting for life: Jessica Muse at 30 minutes old. The moment she leaves her mother's body, Jessica is dying. She has hypoplastic left heart syndrome
Five months on, the incredible work by the fetal cardiac team at The Freeman Hospital in Newcastle means Jessica is at home for her first Christmas, to the joy of her parents — Claire and her husband Dom, 29, a computer programmer.
Here, we tell the gripping story of the extraordinary minutes after Jessica’s birth.
3.13pm: Jessica is born by Caesarean
The moment she leaves her mother’s body, Jessica is dying.
She has hypoplastic left heart syndrome: the left side of her heart, comprising the left atrium (the upper chamber that receives oxygenated blood from the lungs) and the left ventricle (the lower chamber, which pumps that blood to the body) are under-developed.
The valve between the two chambers and the aorta, the main artery from the heart, are also too narrow.
This can be corrected by an operation when she’s a week old — effectively replumbing the heart to get the right side to do the work of the left.
But Jessica is in far more danger from the fact she’s also been born without a small opening between the right and left atria in the heart — because of her under-developed heart, the blood being pumped in from her lungs has nowhere to go and is backing up into the vein from the lungs.
This would normally be all right for a short time as newborn babies have an opening between the upper left and right chambers and this could have helped Jessica’s heart cope with the overflow.
But Jessica’s heart is missing this opening and without surgery to provide it, it will collapse under the pressure and she will be dead within minutes.
Jessica is delivered by Caesarean — not only is natural birth dangerous for a baby with an under-developed heart, but in the time it takes for her to travel down the birth canal she would have died, unable to breathe because of the pressure in her heart.
Waiting in the operating theatre as she is delivered is the paediatric team from the specialist fetal cardiac intensive care unit: consultant Dr Jane Cassidy, a registrar, and a nursing sister Caroline Smith, whose role is to keep Jessica alive from the second of her birth until she’s delivered to the adjoining theatre for surgery.
In that second operating theatre are two paediatric cardiac consultants, Asif Hasan and Massimo Griselli, specialist theatre nurses and a consultant anaesthetist, making their final preparations for Jessica’s operation.
As Jessica’s mother Claire now recalls, she was nervous and excited about what was about to happen: ‘I knew that once she was born the following few minutes would determine whether she lived or died.
‘But I was also excited, like any mother to be. For nearly nine months I had felt her kicking, Dom had played her music and I had talked to her and told her how much we loved her. I was desperate to meet my baby.’
The obstetrician delivers baby Jessica and holds her so Claire can get a brief glimpse. Then Jessica is immediately handed over to the paediatric team.
'I knew that once she was born the following few minutes would determine whether she lived or died. But I was also excited, like any mother to be,' said Claire Muse
Jessica is just 60 seconds old
3.14pm: Jessica is put on a trolley with a warming bed to maintain her body temperature as she’s cleaned and assessed.
‘The pressure backing up from her heart meant she was not even attempting to breathe,’ says Caroline Smith.
Dr Cassidy puts a tube into her lungs to attach a bag to help her breathe. Meanwhile, the registrar is looking for a vein to fit a port — a device in the skin through which drugs can be administered.
Two minutes old
3.16pm: Dr Cassidy begins to pump air into Jessica’s lungs using a bag. Caroline cleans Jessica thoroughly with sterile wipes, then wraps her in sterile cloths.
Claire recalls today: ‘It was torture knowing she was in the room, but I couldn’t see her.’
Ten minutes old
3.23pm: Dr Cassidy is still hand-pumping air into Jessica’s lungs as the trolley is rushed to the theatre next door.
16 minutes old
3.29pm: The anaesthetist goes to work. Jessica is attached to a mechanical ventilator, which will breathe for her and check her levels of oxygen, carbon dioxide and acidity in the blood — vital information on how her body is functioning.
There is constant fear that without regular blood supply, her organs will fail.
The aim of this operation is to open up a passageway between the left and right atria to provide somewhere to go for the blood being pumped into the blocked left chamber.
This surgery means clamping off the major blood vessels supplying the blood to the heart as soon as possible to relieve the pressure. While the blood supply is stopped, Jessica’s body and brain will be starved of oxygen.
This means the surgeon, Mr Hasan, has just two minutes to get into the heart, open up a hole and restart the blood supply.
‘After this time Jessica would have been at risk of brain damage or death,’ he says.
As well as being anaesthetised, Jessica’s head is enclosed in a special ice cap. This is to buy the team ‘a few more precious seconds’, says Mr Hasan.
20 minutes old
3.33pm: ‘The anaesthetist gave the go ahead and we opened up her chest down to her sternum and began to work on her heart,’ recalls Mr Hasan.
‘The first thing was to identify the veins and arteries that supply and remove blood from the four chambers and then prepare to clamp them off.’
27 minutes old
3.40pm: Once the team is ready, the theatre nurse starts the stop clock and Jessica’s blood supply into and out of the heart is stopped. ‘During those two minutes it felt like slow motion,’ says Mr Hasan.
‘First, we suctioned the blood from all four chambers, which takes half a minute. Using a tiny pair of scissors, we entered the heart via the upper right chamber and cut away a section of the wall between the right and left upper chambers.
‘Though it is a relatively straight-forward thing to do, taking less than a minute, it’s complicated by the fact the heart of a newborn is around the size of a walnut and is still beating while you are working.
‘You could have heard a pin drop in the theatre — we were all focused on doing what we needed to do, steadily but as quickly as possible, working as a team.
‘I was aware of every second that passed. This is a particularly hair-raising procedure. The adrenaline is there, but you have to stay calm and focused.’
Jessica faces a further operation in January to re-route the pulmonary artery so that deoxygenated blood from the upper part of her body is sent directly to the lung without going through the right ventricle
47 minutes old
4pm: The team monitors Jessica’s heart for blood leaks, which will show up visually or through heart monitor readings. They continue to check her organ functions. Jessica is still on a ventilator.
One hour, 47 minutes old
5pm: ‘I was in recovery and desperate to hear news of Jessica,’ says Claire.
‘I became hysterical and Paddy Walsh, my liaison nurse who supported me since Jessica was diagnosed, went to find out what she could.
‘Mr Griselli came out and told me the main part of the operation had been a success. I could tell from his face they were pleased with the outcome.
‘I calmed down and allowed them to take me back to the maternity unit at the Royal Victoria Infirmary two miles away.
'I had to stay there as The Freeman Hospital has no maternity facilities and I’d just had a Caesarean. I hated leaving her, but Dom promised he would stay with her.’
Two hours, 47 minutes old
6pm: The team prepare Jessica for moving from the operating theatre to the specialist intensive care unit.
They have stitched the incision in her chest, but because her heart is so swollen from the operation they have to leave open a small section, around 2cm, but covered with a special plastic film.
‘There is no other procedure that is so time dependent as this one,’ says Mr Hasan. ‘It is practically unique.’
Three hours, 17 minutes old
6.30pm: Jessica arrives on the intensive care ward and is kept on a mechanical ventilator. She won’t breathe fully by herself for nearly five months.
‘The first 24 hours after an operation are crucial because the body and especially the heart has been put under so much strain,’ says nursing sister Caroline Smith.
‘Though things can go wrong at any time with very small babies, this is probably the time when they are most likely to die.’
Jessica is monitored every half an hour.
One day old
July 17: Against doctors’ advice, Claire discharges herself from the maternity unit and arrives at the hospital to see her baby for the first time since she was born.
‘Jessica was covered in drains and wires, but she still looked beautiful to me,’ recalls Claire. ‘I put my hand through the incubator and held hers. I stroked her body and told her that we loved her and to keep on fighting.’
For the next five months, Claire hardly leaves her daughter’s side.
Ten days old
July 26: After an emotional goodbye from her parents, Jessica undergoes a seven-hour operation — called the Norwood Procedure — to re-plumb her heart.
The pulmonary artery, which provides blood from the right ventricle to the lungs, is split: one bit is then re-routed to join the (narrowed) aorta where it leaves the left side of Jessica’s heart. This allows the oxygenated blood to be pumped out to the body by the right ventricle.
Though the operation was a success, Jessica is still extremely weak and needs sedation and ventilation to allow her body and heart to recover.
‘I was expressing milk, which was fed to her via a tube,’ says Claire.
‘But I wasn’t able to hold her. All I could do for her was change her nappies and wipe her little eyes.
'At times I felt helpless, but I never wavered in knowing that we were doing the right thing.’
In the long term, Jessica will probably need a heart transplant. But for now, her parents (Claire and Dom) are ready to enjoy a Christmas they thought their daughter would never see
Three weeks old
August 7: At 4am Claire is woken by a call. Jessica’s oxygen levels and heart rate have suddenly collapsed and she is needed to give consent for her baby to go on full life support — she needs to be put on a machine called an ECMO, which puts oxygen directly into the blood — unlike with standard ventilation, which gets the lungs to take in air.
‘Dom and I were running through a dark empty hospital and I was trying to ignore the pain from my Caesarean stitches,’ says Claire.
‘As I got to the ward I could see Jessica stretched out, ready to have the ECMO fitted, and even as I signed the form they were going to work, attaching tubes and wires.
‘We sat in the family room and eventually Caroline came to see me. She explained that Jessica was very poorly: fluid had built up on her lungs.
‘They weren’t sure then, but we later found out it was an infection and she was close to death. After all she had been through, all the fight she had shown, it seemed unbearably cruel. I cried for hours.’
Four weeks old
August 15: Jessica is taken off life support after X-rays show her lungs have improved and she begins to fight back.
Six weeks old
August 30: Claire and Dom are allowed to hold her for the first time.
‘She had her eyes open and she looked up at me,’ says Claire.
‘Holding her next to my skin was indescribable. We had waited for this for so long — there were plenty of tears.’
11 weeks old
October 5: Jessica leaves intensive care and moves to high dependency, where her care is no longer one to one.
‘I came in to work after a day off and Jessica’s bed was empty,’ remembers Caroline Smith.
‘I was so thrilled for them all. Moving to high dependency might not sound much to most people, but believe me that was a massive step in her recovery.’
16 weeks old
November 3: Jessica is allowed out of hospital for the first time for a trip to the park across the road to feed the ducks.
‘We had loads of equipment on board including her portable ventilator, but we felt like a normal family,’ says Claire.
‘Her eyes were full of wonder as she looked around — she was seeing the outside world for the first time.
‘I was a bit nervous about taking her outside and wondered if she would be cold, but we wrapped her up warmly in proper outdoor clothes, which was a treat in itself and she was fine.
‘A real red letter day.’
20 weeks old
December 3: Jessica is taken off the portable ventilator.
‘She made a gurgling sound then a funny little squeak,’ recalls Claire.
‘For the first time since she was born, I actually heard her cry. It was the most wonderful sound in the world.’
21 weeks old
December 12: Just over five months after her dramatic entry into the world, Jessica goes home for Christmas.
She faces a further operation in January to re-route the pulmonary artery so that deoxygenated blood from the upper part of her body is sent directly to the lung without going through the right ventricle, which reduces pressure on the heart.
In the long term, Jessica will probably need a heart transplant. But for now, her parents are ready to enjoy a Christmas they thought their daughter would never see.
‘Words cannot express how thankful we are to her medical team,’ says Claire.
‘They are simply awesome. They have made our dreams come true.’