Born With A Broken Heart

Most Mums and Dads too,  remember those incredibly exciting and mixed emotions at the birth of their child.

Sarah was my second child, and I had a niggling feeling deep inside through out my pregnancy that something wasn’t quite right. So it was with great relief that I could see she was born with all her fingers and toes and looked like a perfectly normal, healthy baby and so her Dad and I were bathed in a false sense of security for a short while.

Sarah’s birth was very quick in that I only arrived at the hospital ten minutes before she was born and entered the hospital with a strong urge to push her out!

She was quite blue and this was explained to us as a reaction to her quick birth. Her dad joked about having one yellow baby (Adam, Sarah’s older brother was jaundiced at birth) and now we had a blue one!

Unfortunately, rather than getting pink as the hours passed by, Sarah ‘s skin turned more

and more blue. A few hours later, with increasing concern Sarah was taken to the special care baby unit, tests eventually diagnosed a problem with her heart and she was transferred to another hospital where she could have specialized treatment.

Back in those days I was expected to stay in hospital for at least two days.  So it was my husband and Dad who drove to the hospital in Leeds, whilst I was left in a four bedded room with a polaroid photograph of my new baby,  whilst the other three women had their babies to hold and cherish.  Looking back now, I am surprised at how easily I accepted the hospital’s policy and how cruel this was as my health was fine.

However, the hospital in Leeds was a specialised centre and I am grateful for all they did for my daughter.  The tests discovered that indeed, Sarah was born with a major heart defect called ‘Transposition of The Great Arteries’.

The first procedure performed later on the day of her birth,  was called a Balloon Septostomy. A crude procedure which involves inserting a tube with a balloon on the end into the groin, this is then directed up to the heart and through the septum, it is then blown up and pushed back and forth through the septum, this is to stop the hole that is already there at birth from closing up.

This simple procedure was performed another three times during Sarah’s first year of life and was responsible for keeping her alive for 15 months.

Sarah spent the first three months of her life in hospital, unfortunately, due to being starved of oxygen in the first few hours of her life, her brain and bowel were affected.  Resulting in a part of her large intestine becoming necrotised.

At 5 weeks old the doctors’ removed a large chunk of her bowel.  She was on medication for having fits amidst confusion as to what was going on in her body.  At one point I noticed a large book called “Diseases of the Newborn” outside her room.   Her head was enlarged due to fluid and we were told there was definitely some brain damage, although, after performing two lumber punctures and three brain scans, all the Doctors could find was a trace of blood on one of the tests and this could have been caused by the needle in her back.

After bowel surgery, other complications evolved including septicemia, somehow, Sarah survived despite all odds, and we were allowed to take her home for the first time on 20th December 1984.  The following day I embarked on a massive shopping spree for christmas, until that day I had not dared to look forward and buy her presents.

My son Adam was such an amazing child and I often wonder how he coped with Mum spending hours at the hospital, My parents looked after him often and as soon as his sister came home he became my right hand man. Although Adam was only two years old, he seemed so mature and helped look after his sister, and would watch over her in her bouncing cradle whilst I got on with jobs around the house.

Life took on a sort of normal pattern for a year. Other than a couple of television appearances along with the cardiac surgeon.  My Mother in Law was on a mission to raise funds for the hospital as we didn’t have a paediatric unit in Leeds and Duncan Walker,  Sarah’s surgeon was forever fundraising and fighting for money to be spent on a unit.

I didn’t realise how blue Sarah was, or maybe I was in denial, but when I look back a photographs now, her blue tinged skin is obvious to see.  One funny memory of this time in her life was that she had a habit of posting Adam’s little toy figures through the letter box style opening on our video player.  She would push her fingers through and they would get stuck inside, she would cry out loud and  have to have to be freed.  It wasn’t until she was laid in bed immediately after surgery that we could see all the little blue indentations in her fingers which were bruised as a result of her antics.

Eventually, the dreaded day came, a letter dropped onto the mat in the hallway, Sarah was booked in for her heart surgery in November 1985 at fifteen months old.

Sarah had major heart surgery on 28^th November 1985. I remember carrying her to the operating theatre as a gorgeous little girl and having to hand her over to ‘Fonzi’ the friendly porter who took her through the swinging doors, where I watched her go with tears in my eyes and a massive lump in my throat.

Her operation was due to last for up to 8 hours. This was the most heart churning moment as only 50% of children were known to survive this operation.

We really had no choice as without the surgery she would be dead before she was two years old.

A Doctor at the hospital in Leeds where Sarah had her surgery told us that they had only been performing this particular procedure for six years and before that she would have been classed as a ‘blue baby’. And she would have died.

It’s funny how we all have our different ways of coping in times of stress and worry.  My hubby and I, after wandering around the ward for a while were convinced by the staff to go out and get some fresh air.  We took ourselves into Leeds town centre, it was a dull, dark, damp day with snow on the ground.  We wandered around aimlessly and found ourselves in a smoky cafe at lunchtime. I couldn’t eat a thing, my throat felt tight and my stomach in knots, but I managed to sip a cup of yorkshire tea, which provided a little comfort.

We headed back to the hospital and waited for what seemed like eternity, we were told the operation would be finished at 4pm but it was 6pm before Sarah finally left the operating theatre.  We later found out that something was amiss and Sarah had been put back onto the bypass machine to correct the problem.

We were warned to be prepared for lots of tubes and wires and not to be alarmed, but my biggest memory of that moment was noticing how pink Sarah’s skin looked, Infact, the surgeon, Duncan Walker, in his broad Scottish accent lifted her foot and said ‘look at those pink toes!’

She did it! she pulled through the op.  But she wasn’t out of the woods yet.

Most babies are on the ventilator for three days, unfortunately for Sarah her lungs were filling up with fluid, her kidney’s were not behaving how they should and at some point Sarah shut down in her mind.

The scariest moment in all of the challenges was after eight days on a ventilator I was handed a limp child with no spark in her eyes.  Her body was there but no sign of the essence of my daughter.

Two days later a miracle happened.  My Mum turned up at the hospital with Adam, she didn’t know how bad the situation was as I had avoided telling anybody hoping that she would somehow awaken from her stupor.  There were tears, especially when Adam asked, “Mummy, why won’t Sarah talk to me?”.  In reality, the only word Sarah could say was ‘Cat’ but I knew exactly what he meant.  He knew she wasn’t ‘there’.

I left Mum at the hospital where I had been staying by her bedside and drove home for a bath and to bring in some fresh clothes.  I noticed Sarah’s favourite toy in the living room and picked it up together with some other toys and took them back to the hospital with me.

Back at the hospital, with Sarah on my knee I took out her ‘Tomy, Doggon Dog” toy.  and this was when the miracle happened, Sarah suddenly became rigid in my arms and began to sob and sob and sob.  I hugged her tight and soothed her and before long she was recognising everyone in the room.  I had my daughter back!

The next day the physiotherapist came to her room and was absolutely amazed at the difference in her.

Later, the Doctors explained that she had something called ‘Central Deprivation Syndrome’, a condition that is due to a person going through so much trauma that they shut down as a form of protective mechanism.  It can happen to adults too and the scariest thing is that they can stay like this without ever awakening.

Sarah  was discharged from hospital a few days before christmas in 1985 and I, once again, embraced the busy, bustling shops, with the sound sounds of christmas songs played in the background with streets smelling of roast chestnuts, the cold air on my face as I left one shop to get to another,  armed with presents and other goodies. Even now,  I still feel a sense of excitement deep inside when I hear the sound of the  local brass bands with the accompanied carol singers. Because, I know we were lucky, we were blessed and not everyone gets to spend christmas with their heart warriors.

 

Some more information that might interest you

Research shows that one in one hundred babies are born with some form of Congenital Heart Defect. And it is one of the most common form of birth defects.

One in four of these children have a critical defect which requires surgery.

My daughter’s birth defect is known as Transposition of The Great Arteries. Sometimes described as the heart being the wrong way round. In effect, the pulmonary artery and aorta run parallel instead of crossing over.

The cause is unknown and although at the time I thought I must have done something to cause it. I was told it was just a fluke of nature.

Sarah had lots of complications due to the lack of oxygen, she had a chunk of her bowel removed and her brain was also starved of oxygen which resulted in her having developmental checks throughout her childhood. Yes she was slow to develop but at five years old, she was discharged as being bright as a button.

As I write these words I am aware of lots of thoughts, memories and emotions, too many to write down here, but I know that Sarah has taught me many lessons in life. I learned to appreciate each precious moment watching her grow and develop into a beautiful young women.

Every day I am grateful for my daughter being alive, healthy and that she had been able to be a Mum. Something else she was told wouldn’t be possible.

 

 

 

I am now proud to say I am a Grandma, Sarah defied all the Doctors, first by staying alive when the prognosis was very poor, winning competitions at Disco Dancing ( the judges never knew of her heart defect) and by becoming a mum herself to two beautiful healthy boys, both through a natural birth.

Sarah has check ups every year and had a pace maker fitted five years ago. She lives a perfectly normal life and I am grateful for the research and the fabulous doctors who dedicate their life to giving children a childhood.

The surgeon who operated on Sarah was called Duncan Walker, he was a Scottish man who had an attitude that some people found hard to understand. He didn’t beat about the bush and called a spade a spade. I loved him for this, he was open and honest and I will always be grateful for his devotion and care not just to Sarah but for all the other babies too.

Research

Sarah was actually a guinea pig for heart surgeons back in the 1980’s. I still remember her consultant telling us that they were learning from every child they operated on. Infact, the operation Sarah had called The Senning’s Procedure after the Surgeon who developed the technique is not used so much as another technique has been introduced.

Unfortunately, congenital heard defect research is grossly underfunded.

Signs and Symptoms

Signs and symptoms for CHDs depend on the type and severity of the particular defect. Some defects might have few or no signs or symptoms. Others might cause a baby to have the following symptoms:

• Blue-tinted nails or lips
• Fast or troubled breathing
• Tiredness when feeding
• Sleepiness

 

Health Care

It is important for parents of children with a heart defect and adults living with a heart defect to talk with a heart doctor (cardiologist) regularly.

Regular visits with a cardiologist are important, because they allow the parents of children with heart defects to make the best possible choices for the health of their child. These visits also allow adults living with a heart defect to make the best possible choices for their own health.

Children and adults with CHDs can help with their health care by knowing their medical history, including the:

• Type(s) of heart defect(s) they have.
• Procedures or surgeries they have had performed.
• Medicines and doses of these medicines that they are prescribed currently and were prescribed in the past.
• Type(s) of medical care they are receiving now.

 

As children transition to adult health care, it is important to notify any new healthcare provider(s) about the child’s CHD. Ongoing appropriate medical care for their specific heart defect will help children and adults with a CHD to live as healthy a life as possible.

For Further information:

http://www.cdc.gov/ncbddd/heartdefects/living.html

Note:

Just a thought to add here is that I do believe each and every one of us has access to the wisdom that is always a part of our being.  I somehow knew that Sarah would survive, some  people thought I was in denial, but I just knew.  

Now when I work with my clients, I point them to an understanding about the true nature of life and our innate wellbeing.  I can’t promise that every story has a happy ending. But I help people understand that they can ‘be ok’ whatever challenges, situations or events they are faced with in life.