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.