Missing Liam

The First Month Anniversary

The next day was Thursday 26th July, it was exactly 1 month since Liam had been born and had died and I needed to be busy. My friend Gina had the week before found a new dance school to put her daughter Chiara in. Alethea and Chiara had previously dabbled in some dance lessons, but the studio that they were previously with was quite strict, played the music REALLY loudly and generally scared them both, so they didn’t want to return, however over the previous few months Alethea had been asking me if I would take her to ‘new’ dancing lessons, I had thought about it but with all the activities that Alethea already did and with the new baby on the way I didn’t see how I was going to manage it. Now that there was no baby to look after I had no reason to deny Alethea something that she wanted to do so much, so that morning we got ready and headed for the new studio “Little Feet” at Narrabeen tramshed. I was worried that she would be scared and clingy and not go in, but as soon as she was there she waved ‘bye mum’ and she was nervously excited to start her new venture. I watched the whole lesson through the glass window with a silly smile on my face enjoying seeing Alethea have fun. The teacher gently explained what she wanted the girls to do, and I watched Alethea and Chiara as they tried their very hardest while having fun leaping through the air and waving  pom poms around. The class was gently quiet with lovely music, the teacher spoke so softly to the little girls and I could tell that Alethea thought she was dancing just the way Angelina Ballerina danced. She LOVED it. When she finished the lesson, she lined up and for “good dancing’” was given a sticker on her hand, she proudly walked out and showed me her very special sticker that according to her ‘not everybody got, only the girls who did really good dancing, and that was me’ and I smiled at her, kissed her on the forehead and held her little cherub face in my hands and asked if she had fun, and she looked at me and said ‘yep, can I come back tomorrow to dancing, how long do I have to wait before I can do it again?’ it was an instant hit.

We busied ourselves for the rest of the day, we went home had some lunch and then set off for swimming lessons. On the way home we stopped in at the cemetery to visit Liam, going with Alethea was comforting as she would hold my hand and tell me not to be sad, that Liam was past the stars having lots of fun and even now each time we visit Liam she says to me ‘You’re not sad are you mummy, because you still have me, and when I was a little baby I didn’t die’ writing this down it feels like it is her looking after me, but trust me it isn’t, this is just the way that she deals with it, she needs to know that I am ok and she needs to feel safe and she doesn’t like me to be upset, which most of the time after the initial first 3 weeks I haven’t been, I was a strong mummy for her and I didn’t want her to see me upset because I knew how much she didn’t like it.

It was also about this time that I became very angry with lots of people outside my little family. Friends were starting to ask if I was feeling “better”, people were sending me texts and emails asking if I was “better” and to answer their question I was not “better”, it felt like people were treating me like I had lost a puppy, it felt like people were saying to me “well it has been 1 month, you’ve had your time to grieve, it is now time to pick yourself up and get on with it” and to tell you the truth I was doing the best I could…I was able to get up in the morning, we had clean clothes, the house was clean, I cooked healthy food for us, I would take Alethea to all her little activities during the week  so I wasn’t dormant at home sitting in a dark room crying the days away, I was coping better than I think most people would, I had to, Alethea relied on me to, but I didn’t need people making me feel like my grief was unfounded, so I became angry and on my Facebook wall I posted the following

Please do not ask if I am better now –

Know that I am not.

Please do not simply ask, “How are you?”

I am grieving.  My baby is dead.

Please do not ask my husband, “How is your wife?”

Comfort HIM.

Please do not say, “Has it already been a month?”

It feels like years to me.

Please do not make less of my baby’s life by saying, “You’ll have more.”

He was the one I wanted.

Please do not tell me, “Time will heal.”

Time is a four-letter word.

Please do not say, “God knows best.”

I am angry with God.

Please do not say, “He is in Heaven.”

I want him here.

Please do not tell me how great your life is –

I am living a nightmare.

Please do not tell me about someone else’s healthy new baby –

It’s like a knife through my flat, empty belly.

Please do not say, “You look as if you were never pregnant!”

I WANT to look pregnant.  I want to BE pregnant.

Please do not keep silent and not mention his name –

He was real – do you not think so?

Please do not ask, “What do you need?”

I need my baby.

Please do not say, “If there is anything I can do…”

Please just do it.  I can’t ask.

Please do not ask if I am better now –

You know that I am not

For me, I believe there are very few “wrong” things that you can say to a person whose baby has died, and I appreciate anyone who actually takes the time to mention Liam rather than pretending he never existed or that he is a taboo subject, however the ones above were  a “no go zone” and people kept saying and doing the above things over and over, and it felt like they were lessoning my baby’s life. It was around this time that someone actually said to me ‘Isn’t it great that Liam is with the sovereign LORD’  I was so lucky that Ryan was with me at this time because I felt physically ill and couldn’t speak, so I relied on Ryan to do the talking for both of us.

It was also about this time that one of my friends told me about a good friend of hers who had also recently lost a baby, would I like to get in contact with her. I instantly said yes, although I was not sure that I would want to see another mum who had lost a baby, I was not capable of dealing with my grief let alone meeting someone else who also had as much pain as I did. However my friend gave me this mum’s email address and I found myself avidly typing away to someone that I had never met telling her about losing Liam, all of which you have already read about, towards the end of the email (which was considerable long!) I wrote:

{Liam consumes most of my thoughts, there are very few minutes in the day that I don’t think of him, and everything reminds me of him, wherever I go I keep thinking ‘last time I was here I was pregnant with Liam’ followed with the thoughts of how I had dreamt life would be after he came.

I have a little girl as well, she is 3.5yrs and beautiful, her name is Alethea, and telling her about her brother’s death was even harder than having to face his death myself on that day. She was so excited about helping with the baby, and I had built this baby up for 9 months with her. It’s hard to know what is going through her little head at the moment and I wish I knew how she is feeling and what she is thinking, most of the time she seems her happy little self, but then she will go off in a tangent about Liam and how he is in heaven and that everyone else gets to bring their baby home from hospital but her, poor little poppet, must be so hard a concept for her to grasp.

Anyway, I feel like I’ve been a bit of a raving lunatic to someone that I don’t even know!

I hope that you are managing to get through your days, this is a pain that no mum/dad/sister etc. should ever have to go through and I feel so sorry that your family is experiencing this as well}

This mum wrote back to me nearly immediately and told me never to feel like a raving lunatic, that she felt that the only silver lining in this horrendous situation was to be able to speak to someone who would know exactly what she was feeling and how much pain and heartache she was experiencing, she then explained what had happened when her beautiful boy was born, in just as detailed an email as I had written to her. We planned to meet the very next night as she lived close to me. When I saw her we embraced like we were long lost best friends and held each other tight for a long time, each of us knew the pain of the other and neither of us wanted to let go. We talked most of the night, I felt that she knew so much more than I did as she was 2 whole weeks in front of me in terms of when our babies died (and yes 2 weeks is not much but back then it seemed like an eternity, each day was a lifetime) this mum was lovely, we cried together and it was comforting to sit in the company of someone who knew exactly how I felt, she too felt old and tired, and confirmed to me that all the emotions that I was feeling were normal. She had spent hours and hours reading the internet on babies dying and seemed to know everything, she gave me details of a social worker called Deb De Wilde and told me that if I did nothing else, that I needed to contact this lady because she was the best person ever to talk to, I was a little taken back thinking of contacting a social worker who had nothing to do with my ‘case’ didn’t work for the hospital that I had my baby at and could think of no reason why this lady would even be interested in talking to me, however I took her advice and contacted Deb the very next Monday morning, leaving a message on her answering machine.

That Monday morning I was again a woman on a mission. I had been replaying the conversation that I had with the director of maternity over and over in my head and I thought if she knew of my case but didn’t know my case and my files had been stored away in medical records it seemed obvious to me that no one had thought to look into Liam’s death and investigate all the causes of why he might have died. My anger got the better of me and I found out the director of medical services email address at the hospital that we had gone to and decided to send an email. Yes I agree that I can be nasty via email, it is something that I am generally not good at face to face, however I was a mum of a baby who had died, I was like a lioness trying to protect her cubs (all be it a little too late) but it was my job as a mum to get to the bottom of it. Below is a copy of the email I sent (all names deleted or changed!)

Hi Matthew

I am Amanda Campbell, I had a baby at your hospital on the 26th of June this year who passed away 2.5 hours post birth. I was 39 +4 weeks.

I reviewed my notes last Wednesday which had been filed away in the medical records and I would like to raise a few issues which either were not explained to me or I believe have been poorly handled.

I had SROM at 11pm on 25th June, called delivery and arrived at the hospital at midnight. On route my contraction began and I had around 5 contractions by the time I arrived. The midwife put the CTG machine on me and it showed that each time I had a contraction FHR dropped from 150 down to 50-80 with a slow recovery post contraction. My obstetrician was called in and arrived at 1am when he decided to do an emergency C section, this decision was made at 115am but documented in the notes by the midwife at 130am. I was a Cat 1 emergency and the baby was not born until 244am.

On birth he had meconium stained liquor (but was easily intubated) and his HR was low, subsequent adrenalin doses got his HR to 80-100 but after 2 hours of resus he had a very poor prognosis so my husband and I cuddled him until he passed.

In the hours and days post birth I received numerous blood test (non which showed anything unusual other than bile acids of 7 which I would call only slightly high) nothing remarkable with the placenta or umbilical cord etc. It was explained to me that ‘not every women who goes home from hospital after birth takes their baby home’ and that if my baby had been born the next day (via a planned induction) that he would probably have been a still birth (although apart from marginally high bile acids there is no proof of that either)

So why am I emailing you??

If my son Liam had of been a child and died of ‘unexplained’ circumstances I am sure that there would have been an investigation. At no time did the hospital look at what they had done and considered that maybe they failed their duty of care and caused this baby’s death.

I was a Cat 1 emergency which means that time from decision to incision is usually 30mins yet Liam was not born for 1.5hours. In that time it is very clearly shown on the CTG that his HR was decreasing every contraction and then regaining post contraction, however as time went on his regain was slower and not quite as high. (I was informed by the paediatrician that he believed the ‘last hour of my pregnancy went horribly wrong’) by 205am when CTG monitoring was ceased Liams HR was no longer regaining, and from 205am until birth I received no monitoring whatsoever.

If Liam had of been born at 145am (30mins post decision to do a C section) I know that he would still be here today.

So why pre me looking at my notes had no one thought to look at what the hospital had done to see if all due care had been taken by you. There was obviously a delay somewhere in the system that failed me, and it wasn’t waiting for an anaesthetist as he was already on site. Why if I was a Cat 1 was I not just put under a general rather than given an epidural which I am sure took up a lot of my 30mins, why did I wait 10mins in recovery before entering the OT and what was the wait in OT before the procedure started and more to the point why did it take from 115am till 205am to get moving out of the delivery suite and off to the OT.

When your baby dies as a mum you have a lot of guilt. This is fuelled by all the tests and speculations by the doctors post birth, but at the end of the day my baby’s death certificate states ‘unexplained’ and no one has thought this a little odd or looked into hospital policy to see if they did everything possible to prevent his death.

I have brought these things to the attention of the NUM of mat/paeds and to my obstetrician.

I do not think it is acceptable for a baby to die in your hospital without a full investigation, not only of the mother and baby but also of the institution, you cannot ‘sweep deaths under the rug’ and not investigate fully.

I am yet to hear what the NUM of maternity and my obstetrician have to say but I am sure it will be along the lines of ‘We did everything as fast as we could and we don’t recall any obvious delay’ and that Liam’s death was probably inevitable anyway, because that is what they ‘have to say’ so as not to admit liability, but sometimes all that some people are looking for is a simple ‘sorry had we done as our policy states there is a good chance your baby would be alive’

I believe any death of a baby in your hospital should be looked into and investigated to the full. Just because their life hadn’t started yet does not make them any less of a person than a child/adult who dies in your hospital from ‘unexplained’ reasons. I am sure you have policy meetings within the hospital and I believe that you should have a policy in place for this very reason, and have an external person look at each individual case to see if anything had gone wrong.

Also, there were a number of systems that appeared to break down as a result of Liam dying which should not have done so and hence I would suggest that your systems need strengthening (god forbid) if this awful situation was to every happen again, these were:

·         I did not receive any pain relief between 530am until approx 7.30 am when I requested the nurses give me a PCA once I was in my room, I understand most other hospitals policy is that pain relief should be commenced in the recovery room which if this is not your policy should be adopted as it took until late morning before adequate pain relief could be achieved. At 10am I was informed that also ‘normally’ post c section a voltaren suppository is given in recovery, which I did not receive until 10am

·         In the moments where my husband and I were able to cuddle our beautiful Liam as he passed away, your staff insisted on moving me onto a separate bed and transfer me to recovery and hence I watched in horror as he took his last breath while being moved, not the loving end that should have occurred in this time, I would suggest that an extra 20 – 30mins in the operating room to say goodbye would not have been an issue in this situation as there appeared to be no-one else in recovery and I am sure all the OTs were not in use.

·         After the emergency C-Section, I was left at least partially open on the table for approx 1.5 to 2 hours until the doctors who were working on Liam came back to close me up, surely there is sufficient doctors in the hospital so that they could continue to give Liam every care he needed while someone else could have closed me up earlier to reduce my risk of infection.

·         We spent from the Tuesday to the Friday on the maternity ward, which was staffed by two wonderful nurses (Jane and Sally were extraordinary in their care and help) and allowed us to cuddle and say our goodbyes to Liam, however the pain of losing your child is not helped by hearing the cries of new born children to families in the rooms around ours who apparently are “luckier” than us, perhaps an alternative location for the grieving parents away from other new babies would be more appropriate.

·         Your hospital psychologist was most unhelpful, we requested he come before our daughter (3.5 yrs) came to the hospital to see baby Liam, however he finally arrived around 5pm on the Tuesday night, well after our daughter had come to visit and then advised us that the way we had explained Liam’s death to her was completely wrong and may cause scarring. He then proceeded to question my relationship with my parents and brothers from an early age with such questions as “did your mum hug you as a child” while spending very little time giving us advice on how to deal with our grief. It sounded more like he was looking for future clients rather than providing us with any meaningful advice on how to deal with this nightmare and left us even more depressed that we may have further harmed our daughter by giving her the wrong advice on Liam’s death. Same comment for the hospital social worker, who was probably to most unhelpful person we came across during our stay and seems to revel in others misery. I was mistakenly under the assumption that the social worker would help with paper work etc (however it was Jane and Sally that helped the most with this) and the social worker seemed only to care how much she had ‘helped us’ by continuing to ask “so have I helped you a lot” to which we kept answering yes, just to get her out of the room as her melancholy presence was not appreciated.

We did appreciate the effort that Jane and Sally went to in order to shield us from unwanted visitors and the consistency of them looking after us with their cheerful personalities.

Amanda

It was a pretty nasty letter written out of my anger and despair, but I received an email back saying that they were going to investigate and following the outcome of the investigation the email asked me if I would like to go in and discuss what the investigation found, to which of course I responded with a yes to!

That day I had been playing phone tag with Deb De Wilde, we kept missing each other and by the end was a little laughable. Finally I got to talk to this lovely lady who made it seem like Liam was her top priority to hear about. She asked if I could come and meet her that week at the Mater Hospital to which I responded yes to, I still couldn’t fathom why a social worker who had NOTHING to do with either me/my baby or the hospital I had been at wanted to meet with me and hear about my baby but I went along remembering what I had been told about her. Little did I realise at that first meeting how much an impact Deb would have on my life. This is a lady who helps ANY family who has lost a baby, no matter where they have had their baby, this lady has dedicated her life to helping bereaved families and she made me feel like Liam was the most precious angel that ever graced this earth, but our meeting and further discussions is a story for another day!

Alethea at her Dancing lessons

12 Comments

  1. Anonymous

    I don’t think that was a nasty email at all – very clear and thorough and you were well within your rights to ask those questions. I would have thought they should have done an RCA without you having to request it.

    • The email felt a little nasty for me to write! I would have thought that an RCA would have commenced/been thought of but before I had contacted them nothing seemed to have been done, after I contacted them they informed me about 1-2 weeks later that they were going to do an RCA….I don’t know but if they were doing one or had thought of doing one I would have thought that they would have told me when I first contacted them!

  2. Bree

    Hi Amanda, I have been reading your posts for a while now and often go back and re read them and cry a few tears for you and your beautiful family. You may not feel it, but you are an amazingly strong woman and I hope that this journey gets easier for you. You will never forget your precious little boy and he will always be in your heart. Much love to you and your family.
    Bree xx

    • Thanks Bree, after reading your comment I too went back and re-read some of our posts, I only got through 3 and I was emotionally exhausted, so I will have to try the rest another day!
      Thanks for your kind words and your love
      Amanda xx

  3. i am reading every word – from Wales – with tears in my eyes. i would like to send hugs and cuddles to you all.

    • Thanks Cath, Hugs and cuddles are always welcomed and needed! Thanks for reading our journey
      Amanda xx

  4. Dear Amanda and Ryan,

    I felt like replying again because I know how important it is to feel justified and supported in the midst of your anger and frustration. I know I will probably be looked at by some as a little cynical or negative, but at the end of the day, the fact that Liam is not here, just plain sucks (I couldn’t think of a ‘classier’ word, sorry 🙂 ). It is unfair. It is unjust. And, it never should have happened.
    I know people find it hard to respond to someone grieving, but at the end of the day, what is worse? Having someone feel slightly uncomfortable because they don’t how to act around you, or, to be the person grieving the loss of their son? I feel like people want to be philosophical and prophetic when dealing with grief, but sometimes you just need to scream “You know what- the world is a horrible place right now and I want to get off!!!”.
    I know too that ‘experts’ would say it’s not ‘healthy’ to stay focused on any kind of death, but who on earth are they? I think it’s purely human to want to keep them alive, so-to-speak; to have any kind of evidence they were here; to know they existed and that they mattered, and they will always be around.
    I have always laughed at the idea of ‘time healing wounds’. Honestly, for me, time has just been a rollercoaster that every now and again, has reminded again off things that were lost. My father died when I was 9, and as a 28 year-old woman now, I feel like it was yesterday. I even find new ways to mourn as life goes on and new experiences remind me of ‘what could have been’. Who knows- maybe these are the wrong things to say to a family who are so deeply hurting, but I want you to know that you are thought of and supported at the darkest times too.
    Liam was his own person and will never be replaced, forgotten or loved any less. You are completely justified in your feelings and I really hope that you get some answers about what happened.
    I honeslty hope this has not been too cynical….
    Kind regards,
    Stacey xxx

    • Thanks Stacey,
      I agree with what you say… I much prefer that people talk to me or write to me than ignore me altogether! and yes sometimes the world is a horrible place, but sometimes it is lovely as well. Ryan and I have experienced the highest of highs and the lowest of lows, I can’t change anything that has happened but I have tried to change the way we live since Liam’s death…we try to have lots more fun, we don’t miss a chance at telling each other and Alethea how much we love one another…but at the same time I miss Liam with every breath that I take.
      Thanks for your kind words of support, and no I don’t think you are cynical, you just say it how it is!
      Amanda x

  5. Kate

    Amanda, I used to work at The Mater & Deb is truly a remarkable woman. Im so glad she is in your life, helping you through this horrific time. She is so caring & I hope that she can help you & Ryan get through each day. I think about you & your family & Liam all the time, I dont know you but I would love to just give you a big hug. Kate

    • Thanks Kate for keeping our family in your thoughts, I agree Deb is a very remarkable lady and I take my hat off to her for helping families like our over and over again, it has to be mentally draining and she does it with such love/care and grace, I am truly blessed to have met such a wonderful person!
      Amanda x

  6. Thankyou so much for sharing your beautiful baby Liam with us all xxxxxxxx

    • Thanks for your kind comment, I have started to enjoy telling my little boys story…that is all we have of him and I like the world to know how much we love and adore him
      Amanda xx

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