Sophie (24) is a mum to Kaylen (4) and Ziggy (18 months) and until Ziggy was 9 months old she thought she had two healthy boys. However, what she thought was a trip to A&E with a simple childhood illness turned out to be the start of a nightmare for her family. A chest x-ray was taken and it was discovered he had a massive heart. Sophie and her husband were quickly sat down and the doctor told them what no parent wants to hear; your child has an extremely poorly heart and there is no cure!
Thank you for taking the time to talk to me Sophie. Your youngest son Ziggy was diagnosed with dilated cardiomyopathy in August 2018. Can you please explain what this means?
This means the left ventricle of his heart is extremely large and dilated which results in the heart not being able to pump blood around the body. This means he is constantly in heart failure. They measure the efficiency of the blood being pumped through the heart with a percentage, normal hearts are around 55% to 70% however Ziggy’s is 7%.
Ziggy was diagnosed when he was only 9 months old, can you take us back and if you can talk us through the lead up to diagnosis (had he shown symptoms of being unwell etc) and how you felt when you heard your beautiful boy had dilated cardiomyopathy?
He was unwell from 3 months with a wheeze and cough/cold all symptoms of bronchiolitis which is very common in babies under one. This is what it was put down to by all of the doctors who had seen him previously. These symptoms were persistent and continued on and off until he was diagnosed, and now continue when he is struggling.
When they had discovered his diagnosis the doctor sat us down to explain which was gut-wrenching. You never think you are going to be the mum that is given news like that. That your baby is going to be rushed to intensive care to try and save his life and there are treatments that may or may not work but this may result in a heart transplant.
Is there a cure or treatment for this condition? What options are there for Ziggy?
There is no cure for dilated cardiomyopathy. Treatments are available but unfortunately, he was diagnosed far too late and the medicines he was on are no longer working for him. He is now back in the hospital attached to machines to keep his heart pumping.
The only option for a better life is a heart transplant but unfortunately, there are just not enough hearts being donated for the number of children waiting for them. Organ donation is so important to people like Ziggy. It is a gift of life you can give in the face of a terrible loss. Please think about signing yourself and your children up for organ donation. Hopefully, you will never need to give or receive organs but please think about little Ziggy and sign up. The most important thing is to tell your family of your wishes because ultimately it will be their decision to make sure its the right one.
Kaylen seems like a wonderful big brother; how much does he know about Ziggy’s condition? How does he deal with times you and Ziggy have to stay in the hospital?
Kaylen is a brilliant big brother and he loves Ziggy so much! He knows a lot actually. We have told him that Ziggy has a poorly heart and he knows he has a tube for his milk because he gets tired drinking it, and he knows he has a tube into his heart so that the medicines can help him. He is very good and understands why we need to be in hospital but this hospital visit hasn’t been easy. We have noticed it has started to affect him a lot. We are currently in the process of seeing a clinical psychologist and have got a referral for play therapy so I hope this will help him. He misses his brother so much.
Ziggy’s condition and ultimately his diagnosis must have changed you as a person. How do you feel you have changed during this journey? How has this changed/affected family dynamics?
It has definitely changed me as a person. This has made me stronger and more resilient, I stand up for what I believe in and make sure my voice is heard. It has taught me that my mothers’ instinct is something stronger than any doctors ability. I see the world very differently now. The little things are now big things. And I appreciate things a lot more than I did. Ultimately I like myself a lot more and I feel it has changed me for the good. Our family is stronger than it has ever been. Yes, we are sleep deprived and exhausted from 2 children, juggling work and hospitals, endless appointments and constant medicines and feed changes as well as trying to balance a ‘normal life’ but we make sure that we make every moment count.
When he isn’t in the hospital, what does a normal day look like for you as a family with regards to his care?
When we came home after diagnosis it was very difficult to get used to giving all the different medicines, doing injections and feeds etc but we also had to help Ziggy get back into life at home. He has just spent 9 and a half weeks in hospital and his home was the hospital we had to slowly get him used to our home, our family and friends the car etc and it was hard. A typical day would be my husband going to work and Kaylen going to pre-school. Being that Ziggy will have had 2 pump feeds, an injection, and many medicines.
Ziggy has 2 injections, 6 pump feeds, medicines 25 times during the day & night, inhalers multiple times a day and multiple nappy changed due to his diuretics he is on. There are also multiple appointments we need to go to in Bristol, Gloucester, and London hospitals along with physio appointments, therapies, dentist, health visitor, community nurses the list is endless and I have an endless list of jobs to match including medicine ordering and pickups, making phone calls to all these health professionals, changing appointments and so on. It’s very hard to fit this in around a normal routine, his brother’s football training and swimming lessons etc but we make it work.
It’s obvious that organ donation is important to you, is this something you’d thought about before being in this position? If not but knowing what you do now, what would you say to someone who is undecided about whether they would like to donate their organs (or their loved ones) after death?
It is very important to me I need someone to make that selfless decision at the worst time imaginable and it is so hard to think about that! I was an organ donor before Ziggy was diagnosed but I hadn’t thought much about whether my children would be. They are both organ donors now, although Ziggy wouldn’t be able to give much due to his heart compromising most of his organs. I would say to some undecided that they should think about it now and stick to your decision during that pain. If you were in my situation if it was your child desperately in need of an organ would you accept an organ? Then sign yourself and your children up to be organ donors. I hope nobody has to go through losing their child that is a pain I cannot even imagine but it’s a pain that is getting closer every single day that goes by. Organ donation is giving a gift of life to those who have lived a life of pain and suffering in hospitals.
Mummy Social believes that mummy friends are vital during motherhood, have you had support around you during your journey?
Friends are definitely vital during motherhood. It is easy to feel extremely isolated and I have shut my friends out during this awful journey I am on but I know now that friends can lift you up out of the darkness. Social media has helped by being a coping mechanism. I write how I feel and people can relate more than I thought. Complete strangers can send you the most uplifting words and it always makes my day brighter to see I have so many people rooting for my son and are there as a shoulder to cry on. I am very fortunate to have a great support system around me and believe this is the reason I have been able to be so strong for my son.
Interview by Danni, Mummy Social Team