We lost our daughter Jessica Naomi Clarke on 15th July 2012 at 12 days old.
Jess’s labour was relatively straightforward; she arrived within an hour weighing in at a hefty 9lb3oz. I was kept in hospital for 3 days due to blood-loss, however Jess was given a clean bill of health and we went home the happiest parents on earth. I will never forget the first morning back home, I remember sitting in bed with Jess, her elder sister Libby and my husband, I had never been happier and I was so content and at peace with my life.
Sadly that feeling didn’t last long. The following day I felt something was wrong with my Jess, she seemed to be breathing erratically, and during the night of her fifth day of life we were so worried about her breathing that we recorded the unusual noises she was making on our mobile phone. We were due to see a midwife for the heel prick test the following day and first thing in the morning we called explaining our extreme worries and that we were considering taking her to A&E (it was a Sunday), however, we were assured that the midwife on duty would put us at the top of her visiting list and see us straight away. It took 6 hours and numerous calls for her to get to us, and when she did she hadn’t been informed that we were worried about our daughters health. When she arrived, she listened to our recording and initially said she thought Jess was making grunting noises (which is a serious condition in new-born babies), but then observed her feeding, noted there was weight-gain etc. and decided that she was absolutely fine, and actually described her as ‘thriving’.
I wasn't reassured, but felt that I was perhaps being an overly-worried mother.
Six days later Jess was still displaying signs of labored breathing so we made the decision to take her to our local A&E hospital. The pediatric doctor spent nearly two hours looking at her, carrying out tests, taking bloods, observations etc. and couldn't find anything wrong with Jess, he also described her as thriving and sent us on our way.
I was so conflicted; the doctor seemed so thorough and caring, but I just didn’t feel right. I knew my baby girl and I just felt that something was wrong, but the tests hadn’t come back with anything.
Then, from about 2am that morning, Jess stopped feeding. This concerned me greatly, Jess had been a fantastic feeder from the moment she was born, however as we had been told by the doctors the day before that Jess was a healthy baby, I again worried I was being a neurotic mother. After great internal debate, I called the midwives again to say I was very worried, my baby wasn't feeding, she was looking pale and I felt there was something seriously wrong. They said that it was “normal” for a baby to stop feeding for periods of up to 24 hours and not to worry, however if I really wanted to put my mind at rest I should visit our out of hours doctor surgery. Knowing I would be seen pretty much straight away at an A&E hospital with a new-born, we decided to forgo the out of hours service and go straight to A&E. As we arrived there my beautiful girl started feeling cold, the triage nurse took one look at Jess and whisked us straight away to the resuscitation room where doctor upon doctor upon doctor kept turning up. For an hour, the doctors tried to save my baby girl but her little body had started to shut down, and within an hour and a half of arriving at A&E, my precious daughter had died.
We had to wait two months for the conclusions of a post mortem to find out what had happened. Like many parents in this situation in that time I blamed myself, trying to work out what had killed her.
The post mortem concluded Jess had died from a virus called Coxsackie B1. The virus had sat pretty much dormant in her body for a week before aggressively attacking her heart. It is a very common virus and most people easily fight it off, but it is particularly dangerous to newborn babies who just don’t have the antibodies or the well established immune system to cope.
We don't blame the doctors who saw Jess the day before she died, there is one blood test they could have done which would have shown the virus, but by that stage there was absolutely no treatment for her, all the hospital could have done was make her comfortable and hope her little body would fight the virus by itself.
What breaks my heart/makes me so angry/will haunt me to the day I die is that the one window of opportunity there was to save my baby was missed when I raised concerns to the midwife that something was wrong when Jess was grunting, over one week before hand. At the inquest this midwife didn’t recall us playing the recording of her breathing and it wasn’t recorded in her notes. However we were asked to play the recording in front of the coroner as well as other medical professionals who all diagnosed her breathing as ‘grunting’ and therefore a strong sign that something was not right with her health.
Like all the mothers I have met at our group, there will always be a part of me that blames myself for Jess’s death. Should I have shouted louder that I knew my daughter wasn’t well? But deep down I know I did my best for my daughter, and I did raise my concerns.
We will never be able to change what has happened to Jess, but I hope that by sharing my story, perhaps I may help even just one mother to follow her instincts, and highlight the need for parents concerns about grunting in newborns to be investigated fully, even if the child appears to be ‘thriving’.
Our GP has offered to campaign with us for midwives in our borough to be re-trained in the issues surrounding grunting in the hope that any other babies showing symptoms similar to Jess will be monitored more closely in the future. We hope to also share information about this on the Mothers Instinct website.
Here is what I have learnt, and will carry with me til the day I die:
I am a mother; I know my children; no-one will ever know my babies like I know them. If I ever have a concern about my children’s health, I will follow my instinct and never again be guided by others.
I would say to anyone worried about their children to be your own guide. Following the death of my daughter I have been told by numerous medical professionals, including the coroner, that often ‘Mothers Instinct’ is stronger than medical analysis.
I also would urge parents of a new-born child to ensure that before a midwife or health visitor leaves you, to check they have accurately understood your concerns and fully recorded them in their report. We will never really know whether the midwife that tended Jess missed the opportunity to save her, and whether she lied or merely forgot us raising our concerns when being a witness at the inquest, but ultimately she never recorded that we were worried about Jess’s health and therefore her testimony was inaccurate.
I would like to say thank you so much to Joanne at Mothers Instinct and the amazing support she has offered. Both my husband and I have felt so lost and at times feel we don’t really ‘fit’ anywhere because what happened to Jess is relatively rare. But the very first time I attended one of her support groups I said as much and she said “Natalie, you fit here”. I thank her so much for sharing her heart-breaking story, and I thank every one else within the group that has shared their stories and given me support and advice and as awful as it is, helped me realise that my husband and I are not alone. I truly believe in the Mothers Instinct campaign and I am grateful for the chance to be involved and the platform to share what happened to my family in order to reach a wider audience.
I hope that I can make a difference in sharing Jess’s story on this site so that parents and medical professionals involved in the care of newborn babies can learn from it.