Member Advice on Coping with Death

This is a hard op for me to write, so forgive me for being sad while I write this, ok ?

In 1994, I met and married a wonderful man, Shayne. We met in March, started going out together in June, and married in November. we knew we were meant to be together.

I fell pregnant in the September, before we got married. I didn't have an easy pregnancy, I had high blood pressure all the way through it. 1995 came, and on 25th ...
...going into labour.

I stayed in the hospital, and on 15th May, they let me out, even though I was only 4 days away from delivery. 17th May, they had me back in, and started me off. They gave me a pessiary, to soften my cervix, and bring labour on. The reason for this was, when they took my blood pressure, they found it to be way too high, and did a scan.

The scan showed, that the placenta was looking 'old'. I still do ... more

This is a hard op for me to write, so forgive me for being sad while I write this, ok ?

In 1994, I met and married a wonderful man, Shayne. We met in March, started going out together in June, and married in November. we knew we were meant to be together.

I fell pregnant in the September, before we got married. I didn't have an easy pregnancy, I had high blood pressure all the way through it. 1995 came, and on 25th April, my back waters broke, but they stopped me from going into labour.

I stayed in the hospital, and on 15th May, they let me out, even though I was only 4 days away from delivery. 17th May, they had me back in, and started me off. They gave me a pessiary, to soften my cervix, and bring labour on. The reason for this was, when they took my blood pressure, they found it to be way too high, and did a scan.

The scan showed, that the placenta was looking 'old'. I still do not understand that, even now.

My waters broke at five to eight the next morning, the 18th May. I was taken to the labour ward, at Leicester Royal Infirmary. As soon as I had my first contraction, they gave me an Epidural, to numb me from the waist down. It feels really freaky, looking at your legs, and not being able to move them unless you physically pick them up with your hands.

They let me labour for a good 20 hours, before giving me a c-section.

My son, Nicholas Christopher Wheatley, was born on Friday the 19th May 1995, at 4:02am, at a healthy 7lb13 and a half ounces. He was let out of hosptial on 22nd May, as a healthy baby boy.

We got into a routine, as you do........ Nothing seemed to be wrong.

His Dad Shayne, loved him to bits, couldn't wait for him to grow up, and be a railway enthusiast, like he is.

One fateful day.
~~~~~~~~~~~~~~~~~

We got up, 20th June. A tuesday morning, everything was well with the world. Shayne had gone to work, he was a butcher by trade.

We had a bath, got dressed, and did all the normal baby things. Shayne came home for dinner, and went back to work at ten to one.

I put Nicholas down for his afternoon nap at one 'o' clock. At about twenty past two, he mumured. I picked him up, and tried him with his bottle. Didn't want that. Tried him with a dummy, didn't want that. Then, his head seemed to loll back, and he didn't seem to be breathing. I tried mouth-to-mouth, wasn't working. Phoned the doctors surgery, which was across the road from my house. Receptionist said "Can you bring him over ?" I screamed at her, "He is only four weeks old", and she said, Whats your address. I gave her my address, and she told me to ring an ambulance. I still had him in my arms.

I phoned the ambulance, and they told me to phone my husband. I phoned his work, and the receptionist told me he had just gone for his break. I told her to get him home pronto, like yesterday.

I put the phone down, and tried mouth-to-mouth again.

The door was being banged. I ran to it, and it was the doctor. He said, where is he ? I pointed to the living room, and ran in after him. He tried his best, and then said to me, "I think he has gone". I remember grabbing the doctors arms and saying "Don't you let him go, don't you dare let him go". Then the door was being banged again. It was the ambulance people.

They had machines and things, and they were trying. My husband flew through the door about two minutes after the ambulance people. He had seen the ambulance, and thought something had happened to me, as sometime before, The door had knocked, and I was upstairs at the time, and had slipped down the stairs in a rush to answer it.

But nothing had prepared him for the sight he saw. He grabbed my arms, and pulled me to him. Everything went a bit hazy after that. Then the doctor said, "I'm sorry". and I knew he had gone. I could hear someone screaming, and realised it was me.

The next few days were a nightmare. On the thursday after he was gone, we had to go and pick up some photos, we had entered him in a bonny baby competition, and they had left a message to say the photos were ready. We went to get the photos. There were other people in the queue, with babies in their arms, and it was pure torture, but we wanted those photos.

We had to wait for an autopsy, before we could register the death, and that came Thursday the 22nd June. Hypoplastic Left Heart Syndrome was the cause of his death, the coroner told us.

What is that? I hear you ask. We did the same asking. They didnt explain it to us very well, but in simple terms here we go.

Hypoplastic Left Heart Syndrome (HLHS), is where the heart has not formed properly, and there are parts missing. There are four chambers to your heart, and he only had two and a half chambers, but it was enough to keep the blood moving for a while.

That was pretty much all they told us. They also said, there was nothing they could have done, even if the finest surgeon was there at the time, but we were not to blame ourselves. Easier said than done. We went through so many what ifs?

This is what I have since found out, through a friend of mine, and yours, NURSE_BETTY.

(HLHS) is a condition in which the left side of the heart is underdeveloped, usually it is the left ventricle, the left atrium, the mitral valve and the aorta are affected.

To understand HLHS, it is helpful to understand how a normal baby's heart works. The heart is comprised of four chambers: the upper chambers are called the left and right atria, and the lower chambers are called the left and right ventricles.

One of the best quotes I have found is; in a healthy heart blood flows from the right atrium to the right ventricle where it is then pumped through the pulmonary artery to the lungs to be oxygenated. Blood then flows back to
the heart via the left atrium to the left ventricle, which pumps this oxygenated blood through the aorta out to the body.

This is how the body's organs and tissue receive oxygen, which is vital. When a baby has HLHS, the left side of the heartis underdeveloped so it cannot sufficiently pump the oxygenated blood out to the body.

Babies with HLHS do not have problems while in the womb - it is only after birth that the heart fails to work properly. This is because all babies
receive oxygen from the placenta while in the womb, so blood does not need to go to the lungs. In addition, there is an opening between the pulmonary artery and the aorta, called the patent ductus arteriosus (PDA) that is
present in all babies. It allows the blood to go from the right ventricle out to the body, bypassing the left side of the heart.

The PDA usually closes a few days after birth, separating the left and right sides of the heart. It is at this time that babies with undetected HLHS
will exhibit problems as they experience a lack of blood flow to the body.

They may look blue, have trouble eating, and breathe rapidly. If left untreated, this heart defect is fatal - usually within the first few days or
weeks of life.

What is hypoplastic left heart syndrome?
Hypoplastic left heart syndrome (HLHS) is a serious problem that involves several parts of the left side of the heart. It is quite rare and occurs in about 1 out of every five thousand babies born. In the United States, about
1000 babies with HLHS are born each year. Two thirds of the babies affected are boys. Most babies with HLHS are otherwise healthy but some have other medical problems including other heart problems, neurologic problems, and
Turner's syndrome.


How is this defect diagnosed?
Prenatal diagnosis: The diagnosis of HLHS is made by an echocardiogram or ultrasound of the baby's heart and can be made as early as 16 weeks into the pregnancy. An echocardiogram of the heart is done when a possible problem is
identified during a routine prenatal ultrasound or because of a family history of congenital heart disease. Left sided heart problems tend to recur
in families where one child is affected.

Estimates of having another child affected range from 4.5 to 13% (Boughman et al. 1993, Brenner et al. 1989).If there is a family history or if concern is raised during a routine ultrasound, the family is referred to a pediatric cardiology centre where adetailed ultrasound of the heart is performed.

Clinical features: Most newborns with HLHS have mild heart related symptoms until the patent ductus arteriosus closes. This usually occurs within 48 hours of birth. Prior to closure of the ductus arteriosus, the baby's lips
or fingernails may look slightly blue, especially when the baby cries.

Babies with HLHS often breathe fast, have low energy levels, and/or have feeding problems. These changes can be subtle and can be difficult to detect in a newborn baby. When the ductus arteriosus does close, the baby may get
very ill very quickly and develop symptoms of shock

Physical findings: The presence of a heart murmur, mild cyanosis (blue colour from low oxygen levels in the blood), fast heart rate, and fast breathing rate are the first clues that an infant has HLHS.

Medical tests: The first tests often ordered are an electrocardiogram, chest x-ray and oxygen saturation test. The electrocardiogram may show decreased left-sided forces. The oxygen level in the blood is usually a little low.
The chest x-ray often shows a bigger than normal heart and extra blood flow to the lungs. The gold standard for diagnosis is an echocardiogram. Cardiac catheterization is done if there are any questions not clearly answered by the echocardiogram.

This is what NURSE_BETTY told me. She has helped me understand it better, but it has not answered the age-old question from every parent with a child who suffered from HLHS..... WHY ? There is no known reason for this condition to occur.

Our son was buried on Friday June 30th 1995, a blazing hot summers day, not unlike this one today. He was buried in a grave which we had permission to have dug at the foot of Shayne's Grandma's grave. It is a proper plot, an dis a double grave, which means whoever goes first out of me and my husband, goes in with him.

We still grieve for him, even though it was nine years ago. I wrote a small poem for him after he died........

God took two hearts and made them three,
But the third little heart was not meant to be,
They asked for a reason, why oh why,
And all they could do was sit and cry.
God looked down and said, look up to the sky,
And they looked up, and saw heaven had found a new Angel.

Thank you for reading this, sorry if I have upset anyone with this op, but I felt I had to write it.

We love you son, night night, sweet dreams xxxx

God Bless all for now, Love Mandy xx

 

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