Claire: Right Where I Am 2014: 2 years 2 months 3 weeks

It's been 2 years, 2 months and 3 weeks since we lost Laura. My life has changed immeasurably. As I wrote my entry last year I knew I was pregnant again but daren't mention it as I felt that something bad would happen yet again. Losing a baby does that to you... it makes you feel very vulnerable, like anything could happen. But the same is true for good things, and as I write this I'm nursing one of my 6 month old twin boys. The one that reminds me so much of his two big sisters (one here, one not).

Becoming a parent again has obviously shifted my focus. With twins I'm lucky to brush my hair on a daily basis let alone do much else, but one thing I always have time for in my thoughts is Laura.

I think of her often. Every day in fact, throughout the day. When I feed my boys I watch them and feel such sadness for her. She didn't have a chance to be tickled by us, be smothered in kisses, be smiled at and cuddled, but she is adored. I'm determined to tell my boys about their other big sister.

My older daughter (as I knew she would) is the best big sister to the boys. She dotes on them. We often talk about Laura and how it would be nice if she were here too running around and playing with the babies but the reality is that if she hadn't died, these two would most probably not be here. That's hard to reconcile in my mind. I hate the thought of being without them, I love them so dearly, but I also would love to have my girl here.

After all the heartache of the past four years (losing my Mum, my Father in Law, aunts, Mother in Law & my Dad's descent into Alzheimer's as well as losing Laura) I know I'm lucky to be here. I'm lucky to have my husband & a strong marriage, to have my older daughter & most of all to have these twin boys.

It was a difficult pregnancy that so very nearly ended badly at the last hurdle so I feel truly blessed to have them. I just miss Laura though. As much as anyone thinks or hopes that I will 'move on' from grieving her, I know I won't and nor would I want to. I don't ever want to forget her or stop talking about her. She was far too precious.

When you have a rainbow baby, people are relieved for you. Some even think that it fixes the pain of grief. I could see it in peoples faces when they saw I was pregnant. These babies are not Laura's 'replacements' though. No baby will ever take her place.

2 years, 2 months and 3 weeks ago my heart was smashed apart, now it's covered in scars but beating again.

~ ~ ~ ~ ~

You can read Claire’s post from 2013 here:

Right Where I Am 2013: 1 years 2 months 2 weeks 2 days

Claire: Guilt

Yesterday I sat and chatted with a dear family friend who suffered the loss of twins more than 45 years ago. As we chatted about our losses, it occurred to me that parents of lost babies suffer from a huge amount of guilt.

We both talked about how we had, at times, questioned whether something we had done had caused the death of our babies. She told me that the day before she had given birth to her twins she had stood on a low stool while her husband pinned up a maternity dress in readiness for alteration. After her babies had died a week later, and despite not even falling or stumbling off the stool a week prior, she had wondered whether this action could have led to their premature birth. I was saddened to see her eyes well with tears as she recalled her losses all these years on.

I remember accepting gifts for my Laura before she was born and irrationally wondered after she died had I jinxed her by doing so. The weeks after she died as we packed away all the baby clothes we had prepared for her, I wondered whether we had been too sure that she would have been fine, whether we had somehow been overconfident of her arrival. Ultimately, I wondered whether, in some way, I had let her down.

My daughter Laura was born with a congenital defect that would have been caused in around week 5 of pregnancy, in all likelihood before I even knew I was pregnant. I’m not a smoker, not a heavy drinker or drug user. I eat well and am pretty healthy and I’m in a good strong and happy relationship. I’ve been assured that nothing I could have done or not done could have influenced how this defect formed. Medical professionals still don’t know why this anomaly (present in approximately 1 in every 3500 babies) happens. Yet, still I wonder whether it was something I did wrong.

We torture ourselves with guilt, possibly because we care so much about our responsibility at becoming parents. Being an older mum, I worried a lot. I worried from before I did the pregnancy test. I worried through all the horrendous sickness. I worried right up to the 12 week scan. I worried all the way through the 20 week anomaly scan (and afterwards) and right up until my daughter was found to be breech. I worried about having a C section, I worried about everything, but in the end all my worrying could not alter what eventually happened to my beautiful little baby, who died aged 2 days old on the operating table during surgery to correct her oesophageal atresia.

My husband is thankfully a very rational, practical and positive man. Without his reassurance I am sure I could easily descend into a pit of guilt, which is such an unhealthy emotion. When I begin to head down that road again he pulls me up (sometimes harshly), and reminds me that “it just happened”. I guess this is part of acceptance. I truly struggle with accepting that Laura is gone, but I have to admit that it is true. The best thing that I can do for Laura now is to talk about her as my much loved daughter and keep her memory alive.

Claire: Congratulations?

“I see you’ve had the baby” – that comment struck fear into my heart and brought a sick feeling to my stomach every time I heard it, which seemed to be more than I anticipated in the days and weeks following the loss of our little Laura.

As we exited the NICU the day after she died, the receptionist arranged to let us drive out without paying for parking with a heartfelt “don’t worry, your baby is in safe hands, I’m sure they will be fine”. It wasn’t her fault, but the comment choked me and I sobbed in the arms of my husband in the lift to the car park.

One card of congratulations had landed on our doormat, followed with an apology for it. Over the days and weeks that followed there were hundreds of sympathy cards. It was nice to see them but so sad that the death of our little baby was being acknowledged way more than her actual birth.

By far the hardest thing to deal with though, was the face to face congratulations from neighbours, acquaintances and shop assistants etc. As other parents dealing with loss have said, it’s like dropping a bomb. You’re met with glances to your missing bump, smiles and that word “congratulations”, and then you have to have that awkward re-telling of the worst thing that has ever happened to you.

The news is inevitably met with shock, dismay and at worst some of the most utterly crazy verbal diarrhoea you could ever imagine to hear (but that’s a whole other subject of its own). I’d usually end up with my arm around the person that congratulated me, comforting them as they took in the news, or saying to them “don’t worry, it’s not your fault” whilst trying to get away with some dignity intact.

Thankfully, my wonderful husband paved the way for me with a lot of people as did a lot of my wonderful friends. However, last Christmas, eight months after we lost Laura, I received a handful of cards addressed to Claire, Enda, Georgia & ? along with “congratulations” and “you must be busy with the new addition”. It’s tough. I still have to “drop the bomb” to them. You wish things were different. You wish that all those cards that lined the window cills were congratulations cards rather than sympathy ones. In the past, I’ve never thought twice about offering congratulations to someone that looked as though they’d just had their baby. However, they usually have their newborn with them as that’s normally what happens isn’t it? Only one kind lady in our local bank behaved impeccably when she asked me whether I’d had a girl or a boy. Perhaps she read it in my face, perhaps my reply of “a girl, but it’s complicated” told her all she needed to know. Whichever it was, she was so calm and quiet, apologised for asking and told me that she’d be happy to hear what happened whenever I felt ready.

Since we lost Laura, I’ve taken nothing for granted. I now know that you can go all the way through a pregnancy and still come home with no baby. I know that dreams can be shattered, that hearts can be broken and I know that sometimes “congratulations” can be both the sweetest and the cruellest word.

Claire: The Pipette in my Fridge

We moved into our new house in December 2011 in readiness for our baby who was due in April 2012. All of us were excited; husband, daughter and me full of expectation. I began to adapt to living in a house rather than a flat. It was an easy enough adjustment. The only downside was having to waddle upstairs to throw up instead of just popping into the bathroom in our flat. I’d had horrendous sickness all through this pregnancy. My first pregnancy had been bad enough when I’d thrown up for around 12 weeks. This time round, things had been even worse. I’d thrown up every day throughout the pregnancy apart from about 3 weeks in the final trimester, and I had the most awful heartburn for the final 16 weeks too. But I kept telling myself that the sickness was a good sign. It meant that the hormones were high and that meant that the baby should be strong and healthy.

When we moved house we negotiated to keep the previous owner’s white goods. Only 6 months after we moved in the fridge freezer decided to give up the ghost, and that is where the pipette comes in.

My husband and his brother removed the fridge and put a new one in its place. The only concern I had was whether my husband would think I was mad for keeping the tiny little pipette that had been in our fridge since 22nd April 2012. Thankfully, he understood, and gently placed it into the top drawer of our new fridge unseen by anyone but us.

Our beautiful baby girl Laura was born by C section on Friday 20th April, seemingly healthy. We were so delighted to have her with us, so relieved to meet her, to hear her cry. But she wasn’t as perfect as we thought. As soon as she was born I tried to breastfeed her. My older daughter had latched on and sucked for dear life only minutes after she was born, but Laura seemed to struggle. She hardly seemed to suckle and when she did, she coughed and spluttered and eventually began to have awful episodes of not breathing. The night she was born she was diagnosed with a condition called Tracheo-Oesophageal Fistula. Overnight she was transferred to a top London hospital but as I had to have a C section due to her breech presentation, I had to wait in our local hospital until the morning to get discharged (there were no beds available in the hospital Laura was transferred to).

And so began my attempts at expressing milk for my little girl. My older daughter had been an expert breast-feeder and despite having problems in the early few weeks, she took to it well and in fact refused anything other than the breast, meaning that she moved straight onto cups rather than bottles. Because of this, I had never really experimented much with expressing. Now I was faced with this as the only current option, so when a midwife at our local hospital asked me if I would prefer to move to a private room until I could be discharged, I declined thinking that hearing all the other crying babies may help me concentrate on producing some nourishment for my darling little Laura. That, and the beautiful picture of her that I had taken only hours earlier on my phone.

In between getting discharged and visiting Laura on the Saturday, I massaged and tried to express every 2-3 hours, setting the alarm on my phone so that I wouldn’t miss an attempt. Most of these attempts led to nothing but a flushed face and sore breasts, but eventually at around 1pm on Sunday 22nd April 2012 while Laura was having her corrective surgery I finally began to see small drops (small precious drops) of colostrum. I was elated. I could finally look forward to giving our little girl some nourishment and protection when she came round from her operation. I was given dozens of little pipettes and instructions on how to collect this “liquid gold” as the neonatal nurses called it. Two small pipettes with drops of my colostrum were labelled and placed carefully in the NICU fridge alongside whole bottles of milk expressed by loving mums for their poorly babies.

At 6pm on the Sunday, Laura’s operation was still ongoing. We weren’t unduly worried (not openly anyway), so I went to the expressing room and had just begun to squeeze out some drops when there was a knock on the door and I was hurried away to the consultation room to hear the words that turned my life into a spin and eventually broke my heart. Our lovely little Laura’s lung had collapsed, she had gone into cardiac arrest and the surgeons were unable to re-inflate her lung. They had tried for 45mins to resuscitate her with no success and by now her brain function would have been zero. There was no hope of a positive outcome. We were asked permission for the surgeon to stop resuscitation and were rushed off to the Surgical Theatre to receive our still warm but bruised and battered little baby only moments after her time of death had been called – 6:08pm.

We stayed with Laura for hours after she died. Some of our close family came to see her and we removed the drips and tubes, washed her and dressed her and cuddled and kissed her.

The only thing we brought home from the hospital that day along with our sadness and tears of despair was the tiny little pipette with the drop of liquid gold that now resides in the top drawer of my fridge.

Claire: Laura's Story

In August 2011 I was shocked yet delighted to discover that I was pregnant with my second child. Shocked because I was 41, and despite many years of trying to conceive, we had no luck despite conceiving our 11 year old girl naturally (and quickly). It was an absolute delight to be expecting again. My Mum had passed away just 9 months earlier after a long illness and my Dad had finally settled into a nursing home suffering from Alzheimer’s disease. Years before we conceived, my GP told me that I was probably too stressed to allow things to happen naturally. I saw this pregnancy as a sign that things were beginning to calm down a little. We were all so excited.

I suffered with awful morning sickness (as I had done with my older daughter Georgia). Despite losing 5kgs and vomiting sometimes up to 7 times a day, I assured myself that it was a good sign that the pregnancy was established and normal.//39 weeks into my pregnancy I discovered that baby was laying in full breech and I made an appointment to go into hospital on Friday 20th April 2012 to try a procedure called an ECV... baby’s position was not discovered by health professionals until late in the pregnancy so unfortunately the ECV was unsuccessful. As I’d started to have contractions, the safest method of delivery all-round was deemed to be a C-section, which was carried out without complication and our precious and most wanted baby, Laura, emerged into the world at 11:35am.

Laura & Mummy

All seemed well, she was a good size 7lbs 3oz and on first inspection perfectly normal. We spent a few wonderful hours bonding but she wouldn’t feed which worried me slightly. I was told that she may be sleepy and mucousy after the C-section and not to worry. We were transferred to the ward where Laura showed the first sign that things were wrong. She struggled to breathe on bringing up some mucous. A nurse whipped her away from me and cleared her mouth and again I was told this was quite common in babies delivered by C-section, so although it frightened me, I wasn’t unduly worried.

My older daughter Georgia was so delighted when she arrived to see us – finally fulfilling her wish to become a big sister. She spent around 2 hours cuddling her and was a complete natural!

Sisters!

Laura was so relaxed and content in her arms. In fact she seemed quite content most of Friday, but I began to get concerned towards the evening when she wouldn’t feed and the choking incidents increased in frequency and became more and more frightening. A doctor was called to see her and at 12:30am on Saturday it was decided to move her to the Special Care Baby Unit where they carried out some tests. Very quickly she was diagnosed with OA/TOF – a condition that affected her esophagus:

Oesophageal Atresia (OA):

In oesophageal atresia there is a break in the continuity of the oesophagus. The end nearest the mouth is not attached to the end which enters the stomach, the gap usually occurring high up in the chest. The presence of a blind-ending pouch in the upper oesophagus means that food is unable to reach the stomach; any swallowed milk or saliva instead returns to the mouth.

Tracheo-Oesophageal Fistula (TOF):

A fistula, from the Latin meaning ‘a pipe,’ is an abnormal connection running either between two tubes or between a tube and a surface. In tracheo-oesophageal fistula it runs between the trachea and the oesophagus. This connection may or may not have a central cavity; if it does, then food within the oesophagus may pass into the trachea (and on to the lungs) or alternatively, air in the trachea may cross into the oesophagus.

Laura was transferred to Chelsea & Westminster Neonatal Intensive Care Unit at 5am on Saturday morning (with her father Enda in tow), and I waited for the Doctor’s on the ward at West Middx Hospital to discharge me in the morning as no beds were available for me to join her at Chelsea & Westminster. At this stage, Laura (despite being on ventilation and IV fluids) was in a stable condition and not in any distress. We were not unduly worried and were assured that the C&W Hospital were very familiar with this condition and performed the corrective surgery required as a matter of course.

Laura & Daddy

Laura spent Saturday at the C&W and we all joined her as soon as I was discharged. On the journey into London we all spoke about how everything would be ok, how we would adjust, how having a child with a disability would pose challenges but that we would overcome everything. We called ourselves the “Awesome Foursome”. I took a phone call from my brother on that journey and he reminded me that the son of one of our first cousin’s was born with the very same condition (it is found in 1-3500 live births). This buoyed us up even more as he was now a happy 30 year old. I rang my cousin in Devon and spoke to his wife who made me feel ever so positive about what was facing Laura.

We were told that Laura was scheduled for surgery the following morning which surprised us a little – surgery on a Sunday? We were assured that she was well and had passed all the pre-op screening and that the surgery was routine (although not without the usual risks), so at around 1am we went home for some sleep to return again at 8am ready to see her before the operation. Again, on Sunday morning she seemed fine. I got to change her nappy and she opened her eyes and looked at us. We eventually said goodbye to her at 12:30pm outside the Operating Theatre and went off to ride out the wait while the operation began. We walked along the Fulham Road, although I was tired and sore following the C-section. We sat in a restaurant and had some lunch, all the time talking about “after the operation”. How would I manage to get into hospital to see her every day when I wasn’t allowed to drive? How would I manage juggling the school run with hospital visits? Would extended family be able to visit?

Laura

Just before 6pm I went to a little room to express some breast milk (finally with some success). My husband & daughter called me with shocked looks on their faces. We were ushered to a room and we were told by the Consultant of the NICU that all was not going well with the operation and that Laura had been resuscitated a number of times (it turns out that they tried to resuscitate for 40 minutes) but was not responding and was going to die. We rushed to the operating theatre in a state of shock and disbelief and stood outside while the life of our little baby hung in the balance. Sadly, tragically, she did not survive despite the surgeons best efforts. It seems that the operation was far more complicated than originally thought... she had two fistula’s and the second one was in a very difficult position up towards her throat. They removed this, but Laura suffered a collapsed lung and cardiac arrest and was unable to regain her breathing. At 6:08pm on Sunday 22nd April 2012 she was pronounced dead.

It is the most awful feeling to be completely helpless when your child is in a grave situation. My heart was well and truly broken on Sunday and I now know what real pain feels like. At no time had we considered that she might not live through the operation. There were babies recovering from the same operation that were 10 and 12 weeks premature and Laura was a full term, (seemingly) healthy baby. We were at a loss as to what went wrong and agreed to a post mortem to hopefully uncover some answers, but the results were fairly inconclusive. They showed that the operation was more complicated than first thought and that her poor little newborn body was simply not able to cope with the strain.

The Chelsea & Westminster hospital were absolutely fantastic – they offered Laura incredible care in her short time there and all the staff were visibly affected by her death. We had a few precious hours with Laura after she died when we could hold her and wash her and dress her and some of the family here in London were able to see her. Nothing could have prepared me for the emotional roller-coaster of one day feeling true elation at the birth of a much wanted and much loved child, and two days later the devastation and loss at her death. My body was tricked – I’d given birth but had no baby.

I don’t think I will ever really come to terms with it fully. Those words “the baby is not responding to resuscitation” will never leave my mind. That memory of buckling at the knees outside of the theatre with my husband and my daughter Georgia waiting for Laura’s poor little battered body to be closed up and handed to us is one that we will sadly share forever. As we walked to the parents’ room with our precious baby in a sad little moses basket, I hoped that 22nd April 2012 was the worst day of my life.

The information on Laura’s condition has been provided by http://www.tofs.org.uk/. They are a charity who provide information and support to families of TOFS babies. They receive no government funding and rely on fundraising and subscriptions to keep running.