Joshua’s Story

Joshua Titcombe - 27th October - 5th November 2008Before the birth

I found out my wife was pregnant in early March 2008. We were ecstatic, we’d been trying for our second baby for over a year and so the news was very welcome.

Shortly after, we went to our local GP, he calculated that the baby would be due on 21/11/08. We waited nervously for the 12 weeks scan, hoping that everything would go smoothly.

Fortunately, everything went well. We had the 12 week scan and the due date was changed to the 14/11/08.

The rest of the pregnancy was perfect, as the due date grew closer, we got more and more excited. We found out we were having a boy and decided to call him ‘Joshua’ – this upset our 3 ½ year old daughter who wanted to call him ‘John’!

As the due date approached, we all got excited, we bought baby clothes and toys, Grandad and Nana joined in the flurry of baby related talk and purchasing!

Our daughter Emily was excited too, often asking ‘When will baby John pop out?’ and we always replied, ‘in time for Christmas’.

My wife left her job, I planned my paternity leave and saved my holidays up so I could have 3 weeks at Christmas….. We really couldn’t wait for what we hoped would be a very special Christmas time.

Monday 20th October was to be the start of a week we would never forget. We were both feeling really poorly, we had headaches, sore throats and felt generally tired and ill.

I left work on Friday 24th very glad when the weekend finally arrived.

On Saturday night, at about 9pm I heard my wife shouting in the bathroom. When I went to see what was wrong, she told me she thought her waters had broke.

This was nearly 3 weeks away from the due date. I phoned my parents very soon afterwards and my mum advised us to phone the hospital which we did. We were told to go in that night.

At the maternity unit, we told the midwife that my wife was feeling unwell and described the symptoms clearly.

We were very anxious and discussed these concerns with the midwife.

We were told that the illness was most likely a virus, and that there was “a lot going around”.

After being checked over, we were given advice regarding monitoring temperature at home and to keep an eye on the colour of the fluids. We were discharged about an hour later and told to return anytime after 10am the next day.

With still no sign of labour, at about 11.30am on Sunday 26th, we returned to the hospital. We explained that my wife was still feeling ill, tired and had a sore throat and headache.

At the hospital, my wife was monitored for contractions (still none) and given blood pressure and temperature checks.  We were later discharged and told that if the contractions hadn’t started earlier to come back on Monday morning.

My wife started to have painful contractions at about 5.30am. We phoned the ward and were told to wait until the contractions became more regular and intense. This seemed to happen very quickly. At about 6.15am we phoned and informed the ward that we were coming in.

We arrived at Furness General at about 6.30am. The contractions were very painful and intense. At 7.38am, Joshua was born.

After the birth

When Joshua was born, he seemed at first to struggle with his breathing. He was blue and limp and didn’t cry. He was taken to a table at the side of the bed and his chest rubbed. When he didn’t respond to this, the midwife and I went with him to administer oxygen. With oxygen, Joshua’s condition improved, he let out a cry and went pink. We were ecstatic.  Our son appeared to be a perfect healthy boy.

Soon after the birth, at around 8am, my wife collapsed with a very high temperature caused by an infection (later confirmed to be pneumococcus). Her blood pressure also collapsed. We were left in the room alone at the time, and after I while, I took Joshua in my arms and went out into the labour ward to ask for help.

My wife was eventually given fluids and antibiotics.

After my wife’s collapse, my concern for Joshua was immense. I repeatedly asked if Joshua need antibiotics, I was surprised to be told that he didn’t but I trusted what I was told. The midwifes were totally dismissive that anything could be wrong with Joshua.

My wife seemed to recover quite quickly.  Within a couple of hours she was able to talk again and focus on our baby boy. We were both very concerned. We repeatedly asked why he didn’t need antibiotics and were constantly reassured that he seemed fine and there was no reason to give them to him.

Joshua with his big sister and grandparents on 27th October 2008

We were transferred to the maternity ward at about 12am.  Throughout the next few hours, Joshua appeared very reluctant to feed.  He was breathing very poorly (quickly & wheezing a lot) and there was a lot of saliva bubbles around his mouth. These concerns were raised with staff but we were reassured that this was normal.

Throughout the day and night we were told that Joshua’s temperature was too low. On at least 3 occasions he was transferred to a different cot with some form of heating.

During each period of heating, Joshua’s temperature recovered only to drop again when he was returned.

I was re-assured because we thought that if Joshua had an infection, his temperature would be higher and not lower. Before I left for the night, a member of staff reassured me that this was the case.

In the early hours of the morning (around 2am), my wife was so worried about Joshua’s breathing, which was so laboured he was ‘grunting’ she called the emergency bell by her bed for help. Joshua was taken out the room for over 30 minutes but was bought back and my wife was told Joshua was fine.

I received a phone call from the maternity ward at around 9am and was told that Joshua was having problems and that my wife was very upset.

When I arrived, Joshua was breathing with his own lungs. Whilst we were in the room with him, he sharply deteriorated and was transferred to full ventilation.

We were told that our son had most likely collapsed due to a heart defect and he was being treated with heart medication and antibiotics.

We were then told that Joshua had a defective oesophagus as his feeding tube could not be inserted. The Barrow consultants explained that he would be transferred to Manchester St Mary’s for an operation as this was a specialist paediatric surgical centre.  Once the St Mary’s transfer team took over, they soon established that his oesophagus was fine. At this stage, it was explained to me that as Barrow had only 2 intensive care cots, the transfer to St. Mary’s should continue anyway.

At Manchester, Joshua remained in a very serious condition. He was receiving absolute maximum life support including, inhaled nitric oxide, inotropes, adrenaline, dopamine and dobutamine. Joshua had low blood pressure and was acidotic.

ECMO

We were advised that his best chance of survival was extra corporeal membranous oxygenation (ECMO). This is a technique that provides temporary heart and lung support.

After some deep consideration, we signed the forms giving permission for Joshua to be put on ECMO. This was a hard choice as ECMO has numerous risks. However, we knew this was Joshua’s best chance and we felt we had no alternative.

Joshua was transferred to Newcastle for ECMO by helicopter and we followed by car.

When we arrived at Newcastle, Joshua had been successfully transferred to ECMO. We were told upon arrival that he had an 80-90% chance of survival. I will never forget seeing Joshua on ECMO for the first time.

Joshua on ECMO in Newcastle where he received the best possible care

Joshua was very brave, he often opened his eyes when he heard our voices. He could squeeze a finger  when placed in his hand. Not being able to pick him up and cuddle him was heartbreaking. Joshua was being given my wife’s breast milk and it helped us to know we were doing something for him.

Up until 3rd November, Joshua was doing very well on ECMO. All the feedback we had been given was that Joshua’s lungs were recovering and that his prognosis was good.

We were told that he was likely to have neurological problems and that these could be anywhere from mild to severe. We came to terms with this and just wanted to take our boy home.

On the night of 3rd November the staff attempted to wean Joshua from ECMO.

At the latter stages of weaning, Joshua began to bleed from his left lung. This was a disastrous development as when a child is on ECMO, heptin is used to stop blood clots outside the body. This makes any bleeding very serious.

Over the next 2 days, Joshua’s condition deteriorated. Joshua’s struggle for life became ever more desperate.

On the 5th November 2008, around midday we were told that Joshua’s bleeding was too severe and it was time to turn off the ECMO machine.

In tears we agreed to let Joshua go. I begged the doctor to ensure that Joshua went without pain. For the next 15 minutes I sat embracing my wife. We knew our beautiful boy was passing away. A short while later his death was confirmed. Joshua had bled to death.

We sat numb for a while, the staff were wonderful and gave us lots of support. They dressed Joshua is his baby clothes and we got to say our final goodbyes. No words can ever describe the pain of seeing and holding our dead baby boy.

Final goodbyes with Joshua on 5th November 2008

Missing Records

Around a month after Joshua’s death, we were informed that the key record of Joshua’s care, the yellow “observation chart”, which turned out to be the only record of Joshua’s monitoring prior to his collapse had been “lost”.

Despite “extensive” searches, it has never been found so there is no record of any of Joshua’s observations in the 24 hours period before he collapsed.

Inquest

With out any records of Joshua’s care prior to his collapse, investigations into what happened to Joshua have proved very difficult. Initially, the Coroner where Joshua died in Newcastle refused to open an Inquest, we appealed to the Health Service Ombudsman to investigation, but after almost a year of considering the case, they refused to investigate. However, June 2011, almost three years after Joshua’s death, an Inquest was held in Barrow.

The Coroner listed 10 failures in Joshua’s care, including:

  • Failure to listen to and understand the family’s concerns.
  • Failure to record fully or at all many of the factors which, taken together, might have led to a greater degree of suspicion or a referral to a paediatrician.Failure by some staff still to recognise that the standard of record keeping was unacceptable.
  • Failure to understand a basic medical fact that a low temperature  or a failure to maintain a temperature could be a sign of infection in a neonate.
  • Failure to monitor the signs of infection in Joshua.
  •  Absence of continuity of care before and during the birth.
  • The treatment of the protocol on Prolonged Rupture of the Membranes as a rigid formula and not as a tool to make a considered diagnosis and (if necessary) to get a doctor to attend.
  •  Mrs Titcombe and Joshua were treated as unrelated individuals. No thought was given to how, if something was affecting Hoa, it might also affect Joshua. Failure to think of them laterally and holistically as a mother and baby.
  •  Failure by all staff to acknowledge that  the midwives were working as a separate team and that there was no integration between the midwifery and paediatric teams;
  • Failure to identify that the unit was short staffed on that day.
  • Inadequate, or no, training for midwives on the post-natal ward to carry out the observations that the SCBU nurses had done.

The Coroner expressed his serious concerns that Joshua’s observation chart may have been “deliberately destroyed”.

He said there was a “very worrying mark of suspicion” hanging over the maternity unit at FGH The Coroners accused the midwives who gave evidence of getting together to collaborate their evidence.

The full summing up from the Coroners Inquest can be read here.