Meningitis in your words

Anne Marie Harris' story

Location: England
Categories: GBS (Group B streptococcal)
Age: Baby 0-1
Relationship: Child
Outcome: Bereavement

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Meningitis in your words
Anne Marie Harris

On 16th January 2006 we found out we were pregnant. We were so excited, ecstatic, delighted, so happy, and thrilled to bits. A baby so much longed for. A baby so much wanted and needed was on its way.

My pregnancy was wonderful I had no problems I was just my normal self only with a growing tummy. At my 12 week scan baby was healthy, two days small but very active, kicking and doing lots of somersaults. My husband and I were in love. At 20 weeks old we found out we were going to have a girl.

At 38 weeks after a 12-hour labour Amber Rose was born weighing 5lbs 7oz. How perfect she was, just beautiful like an angel. Amber Rose was a very good baby she was very alert and liked to sit on my lap whilst we ate. She loved to watch what we were doing and didn't like to be left out. She was extremely impatient for her bottle and hated having to get breast milk out herself, she preferred it being expressed. A real little madam.

Amber Rose fed every two hours and before we knew it she was over 8lbs. The health visitor mentioned she was doing very well and going through a growth spurt. Amber Rose was such a contented baby girl and only cried for her bottle; she was a blessing, a baby sent from heaven.

Sadly my husband and I lost our beautiful bonnie healthy baby girl to meningitis and septicaemia, suspected cause late-onset Group B Streptococcal. Amber Rose was only four weeks old when she got fatally sick and passed away after a strong fight at five weeks old. One day she was healthy and full of beans and the next day she was fighting for her life.

"We are devastated and totally horrified that no-one mentioned this killer disease to us. All mothers and fathers should be aware of Group B Strep",- says Amber Rose's mother.

I fed Amber Rose just after 12pm and she did not finish her feed, but that was not unusual as some days she finished her bottle and other days she didn't. I put her down near me, and she woke about 2pm and started screaming. I took her downstairs and tried to console her but nothing worked. Amber Rose projectile vomited her feed twice and she did not seem to like to be touched as I tried to change her, so I just held her in my arms. Her cries were high-pitched and I knew there was something wrong with her - she seemed to moan a lot and her breathing seemed strange too. We called our GP for an appointment; they told us to wait and see if things stayed the same. I waited! I wish I hadn't. I should have called the ambulance. I called back and they said to come down to the surgery. When the GP saw Amber Rose he said 'ummmmm, she may just have a bad cold coming on but take her to hospital'. We drove as fast as we could but got stuck in traffic for two hours. By the time we got Amber Rose seen by someone, who took their time, she was unresponsive and in shock. Amber Rose had eyes of death - I will never forget them.

The treatment Amber Rose received at the hospital was impeccable once she was seen. They called St Thomas who came with all their equipment to pick Amber Rose up and take her to their PICU unit where she stayed for six days, until she took her last breaths. It took St Thomas a long time to stabilise Amber Rose for her transfer and when they did we got in the ambulance and she remained calm all the way to the hospital.

It took days for them to stabilise Amber Rose. Every day we got worse news than the day before. Amber Rose was on so many drips that she even had one in her head. She swelled up so much that she was unrecognisable. It was so sad watching her every day. We hardly ate and most days were filled with tears, total despair, deep pain and heartache.

Eventually they managed to stabilise Amber Rose and she was breathing on her own; her blood gas was good but the head consultant sat us down and told us her brain would be devastated from the bacteria. We asked for an MRI scan, which they did, and the results were as devastating as the consultant had said. Her cortex was like a piece of lace; her brain had so many holes caused by not enough oxygen due to the blood poisoning.

We finally had to make the horrible decision of taking her off the ventilator. Unfortunately the damage to her brain was so severe and irreversible that I knew in my heart that taking her off the ventilator meant she was going to die. It was the hardest decision of our lives and one I did not want to make, but eventually we had to do it, as Amber Rose was now just an extension to the ventilator. Not a life for anyone. When the doctor came round to remove the ventilator I wanted to lock the door and not let her in.

Once the ventilator was removed I was terrified but we sat with Amber Rose and bathed her. I changed her nappy and what broke my heart was the way the wee trickled out. Usually, she would always wee on me before she got ill - as soon as I opened her wet nappy she would spray me with wee. But now it was just a trickle. We hugged Amber Rose, we kissed her. St Thomas moved a bed in so we could stay with her all night. We sung to her, we read her The Three Little Pigs and we never stopped holding hands.

Amber Rose breathed for 12 hours and I am so proud of her. Our baby girl was a fighter but in the last four hours she was gasping and choking for air. It was so terrible to watch the child you gave birth to struggle for every breath. I eventually stopped praying for God to give her back to me and I started to pray to God to take her away.

"A mother and father's worst nightmare. We both died with her that morning of 11 October 2006."

We are totally angry that so many of us who are starting families are oblivious to this illness. Our health visitor was not sure what exactly Group B Strep was! This is totally unacceptable - she comes round to check everything is well with mother and baby and she did not know about Group B Strep. Our GP didn't know either and I am sure the doctors who first saw Amber Rose did not know because they first thought she had heart problems.

I carried Amber Rose down to the mortuary where she painfully stayed for two days while we arranged for the undertakers to collect her. I carried Amber into the church and to her resting place, it was the least I could do for her as she fought so hard for us. This was the easy part, living without her is the hardest.

This is the poem Amber Rose's Daddy wrote and I read out at her funeral :

Amber Rose after nine months of anticipation you came early and took us by surprise
Amber Rose you are the light of our lives
You are the brightest star in the sky.
Amber Rose when you cried we cried
Your smiles made our hearts sing
Your grunts warmed our souls
When u slept we watched you in awe and wonder
You are the cutest sweetest baby in the world.

"What little time we spent with you was the best time of our lives and nothing can take that away."

There is only so much words can say and there aren't any words to say how much we are going to miss you. Amber Rose we never knew how empty life would be without you until now. We prayed for a miracle and I guess all we can accept now is the miracle that you came to us at all.

We love you with all our hearts and souls. Until we meet again.

Love Mummy's Little Princess & Daddy's Milk Monster.
April 2009

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