Supporting people with Cri du Chat Syndrome and their families

Our Story: The Sparkes Family

by Jamie Sparkes on 26 April 2014

Hello, we are Jamie and Amy Sparkes. We have a son called Harry who is now 5 years old (born 2008) and a daughter called Poppy who is now 16 months old (born 2012) and we live in Liverpool.

Sparkes Family

Diagnosis

In January 2012 we found out that we were expecting our second child and had a fairly uneventful pregnancy until May 2012, when we had our 20 week scan. The Ultrasonographer thought that there was something wrong with the scan and sent us for further tests at the Foetal Centre in the Liverpool Women’s Hospital. The following day the abnormalities were confirmed, and we had an Amniocentesis.

Two weeks later we met with the Geneticists from Alder Hey Hospital. Over a period of weeks, as the full results from the Amniocentesis came through, we were informed that our baby had Cri du Chat Syndrome.

They painted a very bleak outlook in relation to survival rates, ability to walk and talk and other developmental delay.

The offer of a Termination was repeatedly presented to us and was even highly recommended as the best course of action.

Questions

We recognise that it is not common to be diagnosed before birth. We had time to come to terms with and accept how our baby would be. The news was a massive bomb shell in our lives. We had so many questions, too many unknowns, our dreams were shattered – the joy of having a second child now had a huge shadow cast over it. How would we cope? What would our baby be like? What will our lives be like? What will we tell our Son? How do we tell our friends and family? What do we do to prepare ourselves?

I am not sure if we have had all of our questions answered or not – but we are the other side of that initial shock. We have amazing friends and great family who supported us through those difficult months. We are Christians and believe that our personal relationship with God has given us the strength that we need for each twist and turn of this journey.

Steep Learning curve

Amy spent lots of time trawling through the internet; we joined “Unique” (A rare genetic disorder organisation) and educated ourselves in the world of genetics!

We adopted a very positive attitude towards the situation that we found ourselves in and decided to wait and see how each day developed. We tried not to run too far ahead but took each day as it came.

Slow and steady to fast and furious

Thursday evening, Harry was in bed and we had a friend round for some dinner, Amy had some twinges but was not expecting to be in labour just yet. Amy vacuumed the lounge and spare room also changing the bedding. By around 11pm Amy thought it was about time we went in to hospital. After a few phone calls and a quick drive our baby arrived at 12:43am (just 13 minutes after arriving at the hospital and 10 days before the due date.

Poppy

Despite our panic and concerns all seemed to be going well. Jamie went home to sleep and to take Harry to school in the morning.

The next day, as Jamie returned to hospital, he was greeted by a team of medical staff rushing along the corridor with our baby – heading to the Special Care Baby Unit.

We both stood and watched as nurses and doctors poked, prodded, inserted tubes and attached wires to our baby. She stayed in an incubator for a few days and the staff established her feeding – within a week we were able to take Poppy Faith Rose home.

The fun and games began

Sparkes Family

It became apparent over the following months that Poppy had several medical issues that needed attention. Those were:

  • Laryngomolacia
  • Severe Reflux
  • Constipation
  • Poor weight gain due to huge feeding difficulties
  • Not to mention Chicken Pox, a perforated Ear Drum and Slap Cheek

Poppy

Poppy had three 999 Ambulance admissions, 4 procedures (2 to fix her floppy Larynx and 2 to insert feeding tubes) over 3 operations plus a multitude of appointments with 8 different consultants and home visits from a Physiotherapist, Portage play therapist, Speech and Language therapist, Dietician, and various community nurses.

Jamie now has more bags to carry when he returns from the Chemist than when he goes shopping with Amy!

Happy Birthday Poppy

1st Birthday

Looking back over one year of life, Poppy has achieved so much, she has overcome massive hurdles, she has touched so many people, she has brought new friends into our lives and she has defied the odds that seemed to be stacked against her from before she was even born.

Where we are now

Harry & Poppy

We still live one day at a time, we take nothing for granted and we celebrate each achievement as it comes.

Poppy has taught us a lot; in the face of massive adversity she is placid, gentle, calm and content. We are so thankful for the other families who have children with Cri du Chat. Without them we would have felt so much more isolated and vulnerable. The Facebook page has been an invaluable resource for immediate help when struggling with a specific issue, whether that has been Poppy’s medication, medical care or guidance on day to day living. It is great to feel welcomed, loved, supported and not judged.

We attended the Cri du Chat Support Group 2013 annual conference in Chester. We are so glad we were able to go. The best bit about the weekend was meeting, face to face, other families and children who had been through similar circumstances and who understood what we were currently going through.

Harry has hardly had a mention! He has had his own ups and downs and is an amazing big brother to Poppy.

What does the future hold?

Sparkes Family

We don’t know what tomorrow will bring and we don’t worry about it! When tomorrow comes we will deal with that day, using the resources given to us. We cannot live this life in our own strength.