We lost our beautiful son James at the age of 19 hours to undiagnosed Vasa Praevia on 29th December 2015, and here is the story of what happened to us. 

We had always wanted to have a family.  We got married in 2011 and after months and then years with no pregnancy, I was diagnosed with polycystic ovaries, and due to delays on the NHS we were referred by our GP to a private fertility clinic and offered funding for a round of IVF.  IVF had the greatest chance of achieving pregnancy, and so we decided to not waste any more time and take up our offer.  To our surprise this first attempt at IVF worked and James was conceived. 

We felt so lucky to be finally expecting a baby.  We were a little cautious at first, especially having undergone so much to get there, but I felt really well during my pregnancy, and as each stage progressed our worries began to subside.  James's growth was exactly as it should have been throughout his development and there were no signs of complications.  All the scans and tests I had showed we had a normal pregnancy and healthy baby, but they didn't look for Vasa Praevia, nor check for factors which would have helped identify it was there.  Along with the standard 12 week dating scan and 20 week anomaly scans, I had two additional growth scans in accordance with policy for IVF babies at our local hospital, and I was assured by my consultant that James was doing really well.  We also went for a private scan at 17 weeks to rule out another issue, which was non genetic, but I believe my grandmother had miscarried because of it (incompetent cervix) and we wanted to urge on the side of caution all the same.  If I had known I was at higher risk of Vasa Praevia (1 in 300 IVF pregnancies) and I was not going to be checked for it on the NHS, I am certain I would have opted to scan for that too, but I didn't know anything about the condition.  I never suspected that the NHS would allow me to reach full term in my pregnancy only to lose my baby in a preventable way, and I thought they would be extra vigilant because I had undergone IVF.  We started planning for our baby and preparing for the changes it would bring to our lives.  We couldn’t wait to become parents, and it was the happiest time in our lives.  

James decided to come into the world shortly after 2am the day after my due date.  I woke with a start, felt a sharp pain in my right side and ran to the loo.  My waters broke along with a vast amount of blood.  Feeling very concerned we called Triage at the local hospital who told us to go in to be checked out.  We both felt perhaps they didn't seem to be aware of the gravity of the situation.  Whilst getting dressed I had to run to the loo again and I haemorrhaged more blood.  We made our way out to the car and drove hurriedly to the hospital.  

We arrived at the hospital and made it to Triage where the midwife used a doppler to check my baby's heartbeat, but she couldn’t find it.  She called the registrar who appeared really quickly with an ultrasound machine.  After moving the probe around, he found a heartbeat, but it was slower than normal.  We were so relieved there was one, but worried when he said, “We have to get the baby out, now!”  They raised an alarm and I was wheeled to the operating theatre for an emergency C-section.  People appeared out of nowhere and there was a real sense of urgency at this point.  The nurses and doctors got me ready for theatre and gave me a general anaesthetic.  James was born in just 15 minutes, at 3.09am.

The next thing I remember is coming round in the recovery room.  I was very drowsy, but I remember being overjoyed at my husband, Mark, telling me we’d had a boy, and also the midwife bringing us a picture of our baby.  I was so glad to know that that he was alive after the drama that had occurred, and happy and surprised at how beautiful he was.  We decided to call our little boy James.  Mark told me that the midwife had said he was very ill and he hadn’t seen him.  

Eventually the midwife said we could go and meet our son.  It felt amazing to see him for the first time, and I couldn’t believe he was really ours.  He had lots of tubes going into him and he was on a ventilator to help him breathe.  We stayed with James for around an hour, stroking him and gazing at him with amazement.  We were told that a specialist team was on its way to transfer James to a hospital in Birmingham for cooling treatment, which the hospital had already begun.  When they arrived we were asked to leave so they could start working on him. 

They asked us back some time later.  A doctor came and spoke to us saying that they had been doing everything they could for James, but his condition wasn’t improving and he wasn’t well enough to survive the transfer to Birmingham.  It had taken the doctors 11 minutes to revive James after birth.  He took a breath 3 minutes into CPR and if it hadn't been for that they wouldn't have continued for so long.  He pulled through after they gave him adrenaline; he started breathing and his heart started at precisely the same time.  After he was revived he was immediately given two boluses of saline and then two blood transfusions, and since then they had been trying various drugs to do what they could to save him.  He had lost an enormous amount of blood before he was born.  We were told that James had fought really hard to get to this point, and we realised we were incredibly lucky he had been revived at all.  He was strong;  the doctor had never known a baby survive resuscitation with such low haemoglobin levels before and he was breathing largely on his own, with only minimal help from the ventilator.  She then said that if we wanted our families to see James we should phone them and ask them to come sooner rather than later.  We suspected at this point that the outlook for James was looking bleaker than we hoped.

Over the next few hours the doctors tried giving James another blood transfusion and more drugs in the hope it would raise his blood pressure.  We were told his BP needed to be above 50, but the highest it reached was 39 before slipping back.  At around 6pm we were told that James’s blood was becoming increasingly toxic and he wasn’t responding, and essentially nothing more could be done to save him.  It felt like a terrible dream.  They asked us if we wanted to leave James on the life support, in which case he might survive for longer, or if we wanted him to be taken off for us to hold him.  It is a choice no parent should ever have to make.  Neither of us wanted James to be on the machines when he slipped away and I was desperate to hold my baby, so they began removing the tubes out of his belly button and the feeds out of his hands.  They left morphine and glucose drips in James's hands to keep him comfortable, and the doctor stemmed the bleeding from his belly button.  Mark and I both held James whilst the ventilator was still in, for some time, as they didn’t know if he would struggle to breathe on his own.  Eventually the nurse asked us if we wanted to remove it.  We both wanted to see our little son properly.  When they took the tube out of his mouth he stopped breathing, and I was certain we had lost him, but then he gasped and started breathing again.  We were so relieved.  It felt incredible to finally hold our son, and for all that time, we forgot everything that was happening.  All the clichés about becoming a parent were true.  He was the most beautiful thing I had ever seen, and I would have given my life for him.  Our families left us alone to be as a family.  I was trying to enjoy every single minute before he was gone, and take in everything I could about my little son.

In total we managed to hold James without the ventilator for about 2 and a half hours, before he took his last breaths in Mark's arms.  

James gave us so much in his short life.  The day he was born was the happiest day of my life.  Meeting our son was the most incredible experience I have ever had and I will never forget the sheer joy we felt.  He was such a blessing, the most precious thing I have ever held, and I’m so glad we had the chance to meet him.  We fell in love with James and that feeling about him will never change.  We are so sad for our little boy, that he was robbed of a life which could have been so full of promise.  The enormity of loss is incalculable.  James, and all he would have brought into our lives can never be replaced.  We love him and will never forget him. 

James had type 1 Vasa Praevia; his placenta and umbilical cord developed abnormally, leaving the blood vessels at the end of his umbilical cord exposed at the site where they joined the placenta.  This still allowed him to develop normally, but when I went into labour, a blood vessel in the placental membranes ruptured, resulting in catastrophic blood loss.  

This tragic outcome could have been prevented through diagnosis by colour Doppler ultrasound and subsequent management resulting in early C-section, but sadly the condition is not routinely screened for in the UK.  This is why we want to increase awareness, to empower pregnant women to identify whether they are at increased risk.  It is impossible to describe the pain of losing a baby, and it is made even more heartbreaking to know that something could have been done to prevent it.  The paediatrition who looked after James said "he was perfect", and he was strong and healthy, but without diagnosis of Vasa Praevia, James had very little chance of survival.  

It is thought that Vasa Praevia leads to the death of an otherwise healthy baby every day.  Some pregnancies are at greater risk, and although I did not have any, there can be symptoms, so please visit www.vasapraevia.co.uk for further information.

Thanks for taking the time to read James’s story and for visiting my JustGiving page.

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