Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs.
Welcome Louise to Diary of an Imperfect Mum. Louise is a mum to two little girls. Her eldest daughter was born with hypoplastic left heart syndrome and her youngest is heart-healthy. She blogs about parenthood and life as a heart family over at Little Hearts Big Love and is passionate about raising awareness of congenital heart defects.
1. When did you first realise your child has hypoplastic left heart syndrome (HLHS)?
We first found out about Jessica’s heart condition at the 20 week scan, and it was confirmed by an echocardiogram later that day.
2. How did you feel when you found out that your child has HLHS?
Devastated, bewildered and scared.
3. Where did you first turn for help?
We were given contact details for the charity Little Hearts Matter (http://www.lhm.org.uk) which is aimed at helping to provide support and advice to children who have single ventricle heart conditions and their families. Their antenatal pack was especially good for helping us find out more about what options we had; what the future might hold and helped us to understand a little more about our daughter’s heart condition.
4. What advice would you give a parent who suspects or has just found out that their child has HLHS?
Get in touch with Little Hearts Matter – they are such a good source of information and support. Make contact with other heart families – there are several forums on social media and it really makes such a huge difference to know that you are not alone in the journey.
Finally, know that the choices you make are the right ones for you and your family.
5. What exactly is HLHS? Did you know what it is when it was first diagnosed?
It’s a congenital heart defect where the valve between the two left chambers of the heart is blocked causing the left ventricle of the heart to become very small and underdeveloped.
In the normal heart, the left side of the heart pumps the blood around the body and then the deoxygenated blood returns to the other side of the heart where it is pumped to the lungs to pick up oxygen before going back to the heart and then around the body again.
With HLHS, the blood is unable to travel through the two left chambers of the heart and into the aorta to go around the body because of the blocked (or absent) mitral valve. In the womb, there are bypass systems which mean the blood can still get to the aorta, but these close shortly after birth and so without surgery, babies with HLHS will die.
The surgery for children with HLHS is done in three stages and effectively replumbs the heart so that the right hand side of the heart is able to pump the blood around the body and then it travels to the lungs under its own pressure before returning to the heart to be pumped around the body again. Basically the right hand side of the heart is doing all the work. Children with HLHS effectively only have half a working heart.
In Jessica’s case, her anatomy was further complicated by her having a restrictive atrial septum which meant that the prognosis was particularly poor. We were initially told that post-birth surgery was very unlikely to be successful – thankfully we were offered in-utero surgery to open up Jessica’s atrial septum and give her a chance of being able to have surgery after birth.
6. What are the biggest challenges facing your child and your family?
On a daily basis, the biggest challenge for Jessica is energy levels. Her oxygen levels run at about 80% and she can get breathless and tired quite easily. She also gets cold easily (which causes her to go quite blue) and this is particularly noticeable when we take her swimming (she needs a wetsuit to help keep her warm). Minor illnesses can also hit her hard – coughs, colds and sick bugs have all been known to result in a hospital admission. Thankfully most of the time though she is well and happy and over the last couple of years hospital admissions have been few and far between.
In the immediate future, the biggest challenge facing Jessica is her next open-heart surgery – the third of the three procedures that replumb her heart. We don’t yet know when this will take place, although it may well be before she starts school in September.
7. What has been the greatest help for you, your child and your family in overcoming these challenges?
My faith and the support of my family and friends. Knowing that there are so many people out there who have been thinking of us and praying for Jessica during all the hospital admissions and surgeries has helped immensely.
8. What has surprised you the most about raising a child with HLHS?
How normal family life is most of the time. All the little everyday things that once I barely dared to dream of are a reality. I’ve also been surprised about how much joy I have found in the journey because of being forced to live in the moment. It’s made me appreciate the little things even more and enjoy them because I really don’t know what tomorrow will bring.
9. What’s the main bit of/the best advice you’d give another parent who has a child with HLHS?
Connect with other heart families – knowing that you are not alone on the journey helps immensely and having others to be able to talk to during the tough times is invaluable. Focus on the here and now and don’t let the fear of tomorrow rob you of the joy of today, but at the same time know that it is okay to fall apart when it all feels too much. Let others help ease the load where they can.
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
That people cope with these kinds of things not because they are superhuman, but because they have to. It is amazing how strong you can be when you have no choice but to be strong.
Louise's blog; Little hearts big love shares reflections on life as a heart family as well as posts about normal everyday family life, days out, crafts and reviews. She hosts two regular linkies – From the Mouths of Babes each Monday which is all about sharing the things kids say and Heart to Heart on the 15th of each month where heart families can link up posts.
Thank you very much to Louise for taking part in the series. I love how she shows strength and sensitivity at the same time and particularly loved her final paragraph, it is so true!
Liked this post then check out more in the series here.