Aynab, 27, is mum to 7 year-old Adam. He was born with a condition called Hypoplastic Right Heart Syndrome. She shares her experiences and tips for other parents who might find themselves in similar situations.
The pregnancy
I was in my first year of uni studying Education when I found out that I was pregnant. Everything seemed fine at my 12-week scan until the nurse said that they could see some fluid behind the baby鈥檚 neck. I didn鈥檛 know what it meant, but it seemed alarming. When I looked it up online later, the internet basically told me that my child wouldn鈥檛 survive. I didn鈥檛 want to talk to anyone about it. I shut myself off from the world and focussed on the rest of my pregnancy and my university work. I went for weekly monitoring appointments, and carried on finishing my first year of uni.
The diagnosis
At 28 weeks they sent me to Great Ormond Street for more tests. I went along with my sister and that鈥檚 where they told me that Adam was going to be born with a heart condition. I was given three choices: to give up the baby, to let him die in my arms, or to give him the medication that he needs. It鈥檚 impossible to describe the way I felt. I didn鈥檛 want to talk to anybody after that; I just kind of went blank. My sister cried, but I didn鈥檛 鈥 I felt a bit numb. I already had an instinct that nothing was going to go the way I wanted it to from that point. I made my decision though and told the doctors that I wanted to give birth to Adam naturally and give him the medication that he needs.
The birth
I had five or six doctors in the room while I was giving birth. As soon as Adam was born, they took him away to another neonatal unit. They did tests and scans and had to give him medication as soon as he was born. Adam has a called Hypoplastic Right Heart Syndrome, which is a rare condition in which some structures on the right hand side of the heart are underdeveloped or not formed. He was also born with club feet and a chromosomal disorder.
The next time I saw him was 30 hours after I had given birth, and he was attached to hundreds of wires. You expect that when your baby is born you鈥檙e instantly going to think 鈥淚鈥檓 so in love鈥. But really, it wasn鈥檛 like that for me and Adam. Instead, the love and connection grew the more I got to see him and touch him.
Getting a confidence boost
One of the nurses saw that I didn鈥檛 know what to do when I was trying to change Adam. He had hundreds of wires hanging off him, and I was worried about pulling one out by accident. She gave me the confidence I needed. She said to me, 鈥渋f something鈥檚 wrong with him, you鈥檒l know, you鈥檙e his mum.鈥 Those words to me gave me confidence, they made me feel like 鈥業鈥檝e got this鈥. I went to find her a while back and told her that those words changed my life.
Bringing positive energy
Everyone is given something challenging in life. You have to find a way of seeing the positive things about a situation. I find a lot of comfort from my faith. I always say to myself that after hardship comes ease. This might be challenging right now, but I鈥檇 say to new parents in a situation like mine: 鈥測ou鈥檝e got this.鈥 Your child needs someone who has hope. It makes a big difference if you鈥檙e able to smile as you hold kids. They can pick up on that in a way that adults sometimes don鈥檛 even realise. When you鈥檙e talking to your baby, even if they鈥檙e unwell, the energy that you bring makes such a big difference.
Finding online communities
My advice to parents in a similar situation is to talk to somebody and find support groups, online or in person. There鈥檚 always other people going through similar situations who are able to be there for you. I found a Facebook Group for Hypoplastic Right Heart Syndrome and it had other mums and people in the exact same situation as me. You鈥檇 see a 30 year old with the same condition or a 5 year old, and just talking about daily challenges and symptoms was really useful. I鈥檝e been involved in this group for the past 7 years and I鈥檝e found it really helps.
Making time for yourself
I like going for drives and walks to wind down. I like to go alone when I can, I try not to go on my phone, and I prefer not to listen to music. When I come back I feel recharged. Sometimes things can get on top of you so it鈥檚 important to make time for yourself. If you are able to take a tea break away from the kids it can give you a bit of breathing space. After that I always feel a bit calmer.
Building your child's confidence
You need your child to love themselves. Adam鈥檚 speech is delayed and he gets a bit tired. He gets frustrated sometimes and people don鈥檛 always understand him. I always tell him to take a breath and calm down, and to just try his best to stay in control of the situation. I do everything I can to help him build up his confidence.
He has scars on his chest from surgery, and when he goes swimming he hates it because people sometimes say things. I tell him that his scars are battle wounds, that he went through a war that nobody else has been through. It shows him how much stronger he is than everybody else. He loves his scars now, whereas before he didn鈥檛 so much. Now he sees himself as Superman.
Adam is the strongest boy in the world. I don鈥檛 know anybody who could have gone through what he went through.
Aynab's tips
- Find a support network
It鈥檚 really important to have good support from family or friends. My partner and my mum and my sister know how to look after Adam and can help deal with his medication.
- Take time to yourself
When I go for a walk every day it makes me feel fully recharged. Find whatever it is that works for you.
- Focus on the positives
Adam taught me that even if things are really hard right now, things do get easier and you will have a brighter smile at the end.
