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.
12 hours post birth Elijah began have ‘dusky’ episodes, he went purple but would go back to normal after a few seconds. This happened a few times luckily infront of a nurse when I was still in the delivery suite. He was taken for assessment in the NICU, admitted and a heart scan confirmed the diagnosis. This was later complicated my a Neo Natal stroke.
2. How did you feel when you found out that your child has Tetralogy of Fallot (TOF)
Like my world had shattered, like my stomach dropped, like they had got it wrong. How could my baby, have this? Was this my fault? Was he going to survive? Would I lose my baby or even get to take him home? I was in denial up until 6 months, when we went down to Great Ormond Street for pre admission of the surgery.
3. Where did you first turn for help?
I didn’t, I tried to confide in friends and family let them support me but I couldn’t face them. I was dealing with guilt, with resentment so much anger and I was clearly depressed. After Elijah’s surgery I went to the doctors and was put on medication, I was diagnosed with PTSD. I felt I really didn’t start overcoming this until I joined Instagram! Started connecting with other NICU/HEART/CHD families this then led to my blog.
4. What advice would you give a parent who suspects or has just found out that their child has Tetralogy of Fallot (TOF).
This is a condition that is very hard for the average parent to suspect. If your child doesn’t have a good ‘pink’, colour especially when they cry, or above their lip turns blue, they tire easily go get their oxygen levels checked out, and ask for a heart scan. If you have just found out you have a TOF baby, confide in other heart families, read their stories. It will help, it really will. Never, never be ashamed of how you feel no matter how dark it is. You feel it for a reason, this is your child’s life and yours after all.
5. What exactly is Tetralogy of Fallot (TOF)? Did you know what it is when it was first diagnosed?
‘TOF is a congenital heart defect which is classically understood to involve four anatomical abnormalities of the heart (although only three of them are always present). It is the most common cyanotic heart defect and the most common cause of blue baby syndrome.’ I had never heard of this before, it had never even appeared on my radar before Elijah was diagnosed. It is in fact one of the most common forms of CHD.
6. What are the biggest challenges facing your child and your family?
I think the biggest challenge was re adjusting to being a normal family. After surgery, Elijah went from strength to strength, he was discharged from the development clinic and we do not have to see the heart consultants again until next year! I still am very much over protective over Elijah, and worry a lot about him. When he is at nursery, and even now I will check him during the night to check he is breathing. I fear for the future that he may need further surgeries, that it may affect him being a teenager. We are incredible lucky that he does not need any medication, he has no restrictions he is a normal little boy. After the NICU stay, the surgery it is very hard to adjust to this, and it has left its mark.
7. What has been the greatest help for you, your child and your family in overcoming these challenges?
Other heart families, those who have been through the NICU journey, the surgery, the recovery and the anticipation of every hospital appointment. They are supportive, they understand you and all of your emotions and thoughts. Reaching out to help others who are starting out on their journey to try and help them, and to raise as much awareness as we can. Also focusing on enjoying time as a family, making amazing memories for Elijah and raising him the best we can. We also have an amazing support network around us as well.
8. What has surprised you the most about raising a child with Tetralogy of Fallot TOF?
How strong he is, how far he has come, how kind and gentle he is and most of all how normal he is. He is a loving and normal little boy. He wakes up early, he has tantrums, he loves Peppa Pig. He is perfect. The scar that runs down his chest? It shows that he has overcome a life threatening surgery and condition, and a Neo Natal stroke. Has any of this stopped him? No! He is moving up in nursery 2 months early! He has taught me so much and really is the happiest little boy. He lets nothing stop him from getting what he wants.
9. What’s the main bit of/the best advice you’d give another parent who has a child with Tetralogy of Fallot TOF?
A TOF baby is so much stronger than you think, no matter what is wrong with their hearts, TOF babies are amazing. They have their surgeries, and they can be brilliant. Look at Shaun White, he is an Olympian! There will be some rough times, really rough but you can do it. You do not know how strong you really are until you are a mother sending their chid down to theatre for open heart surgery. Confide in others, let them help, let them support you. Seek our other TOF parents you will really will benefit from connecting with someone who has been through the same journey as you.
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs.
It took one little boy to teach me a whole new outlook on life, and how to be strong. It taught me parenting does not always go to plan, and sometimes you are dealt a really hard card. Life can be really unfair but it will also be amazing, to watch your child thrive and flourish even though he has been through so much. People can pity you, and it can make you really angry, you can be ashamed of admitting what is wrong with your child as you feel to blame for causing it. You will resent others, you will be angry but you will do what you can to protect and make your child happy. You will do what is right by them and push for what is best. They will make you a parent.
The Honest Confessions of a NICU Mum is a blog that is about talking all things NICU, HEART, parent and toddler related with honesty, hormones, humour and finding any excuse for a GIN. Hoping to help and comfort others going through the same thing and to improve the NICU experience for all. Trying to make everyone CHD aware, 1 in 100 babies are born with a congenital heart disease.
Thank you very much to Vicki for taking part in the series. I really loved her response to question 10; her son has taught her how to be strong as i can really identify with that. I think it is amazing that she started her blog to comfort others going through the same experience ,what a wonderful thing to do!