Baby with ToF..looking for reassurance ❤️

[NatSte]

My baby boy has just turned 6 months. He was diagnosed with Tetralogy of Fallot antenatally so we were aware of the situation. For the first few months, he showed no real signs or symptoms and was on the list for elective surgery between 4 and 6 months. At Christmas time, when he was 4 months old, he had his first cyanotic spell and was put on propranolol. He’d somehow caught a virus (even though we went out very little, limited visitors and didn’t allow anyone in who was unwell) and I think this prompted him to be really upset, which caused the spell. He had another in hospital the next day when they took forever to scan him, meaning again he got extremely distressed. A couple of weeks later, he woke from sleeping on me and I didn’t settle him quick enough, which resulted in him screaming and then gasping for air in between. I called an ambulance as I was so afraid. Last week, the same happened..he woke from sleeping on me and immediately started screaming and held his breath and then it ended up in him screaming and gasping for air. When this happens, he goes red but blue around the mouth and nose and he doesn’t respond to us, just screams.

At last he has his surgery date, after me nagging them at the hospital. But I feel like everything has built up and I’m anxious all of the time. I’m constantly awaiting another spell and every time he cries, I feel sick and I shake while trying to settle him. I think he’s teething at the moment so he’s upset and grumpy a lot and also he’s just started solid foods and is struggling to poop so that gets him very worked up.

He’s very particular with sleeping and needs to be cuddled and rocked to sleep but he’s getting more difficult and fighting me at bed time. I have tried sleep training and self soothing but he gets so worked up I have always had to quit and revert to what I know is the safest way to get him to sleep and kee telling myself it’s only a short term problem until he has surgery. I take him to get him to sleep 3 times a day and then have to keep him sleeping on me as he wakes if I put him down in the day. I have a nearly 3 year old who then has to sit and watch tv quietly while he’s asleep and I feel endless guilt over this. We stopped having any visitors after Christmas as I knee surgery was looming and can’t risk him catching anything that will jeopardise his surgery date so we are completely isolated at the moment.

I take him to bed at 6pm and stay upstairs with him as I am too scared to leave him incase he begins crying and I can’t get to settle him quickly enough. This means I cannot put my daughter to bed and I barely see my husband. He sleeps downstairs so as not to wake the baby. I lie waiting for him to wake, which he does after 40 mins and then every 1-2 hours through the night. My husband can’t settle him at all and I feel so much pressure to keep him calm etc that I am turning into a nervous wreck.

I am exhausted, anxious and very upset and scared. Scared that he’ll have another spell and terrified of surgery and how he will be afterwards.

Sorry this is so log and rambling! I’m just hoping someone can share some positive experiences or help to calm my anxiety around him getting upset or having spells and surgery and the recovery afterwards etc ❤️

[Midgeymoo17]

I can not leave you with much reassurance with regards to Tet spells. As the tetralogy patient myself I can say my parents delt with that well before my memory started to form. Also I did not have many. Like your son I was asymptotic at Birth, but I had to be on the Urgent list as I had a life threatening Gastro- Intestinal Condition that could not be repaired until my heart was repaired. (Surgeons tried and I suffered an arrest on the table so revert to plan B- urgent list for heart condition). Maybe talk to your husband about the pressure you are feeling to keep your son calm and if you have liaison nurse about things you could try to get him to sleep.

Try not to stress over surgery date, whether it goes ahead or not on a date is not in your control. My surgery was last minute cancelled 4 times as a baby. As an adult (age 20) for my second surgery I just went in with the attitude I would be going home the same day. My dad and I took a wager on how many times I was going home before it happened and called it a life changing hotel booking. In fact my dad did not even book my surgery day off work as they are cancelled so often.

Honestly, if repair goes well you will not recognise your son afterwards. Now is the worst (including surgery day) you will feel. The spells will come to a complete stop. He may grow rapidly if his growth sis slightly stunted by his condition and he will behave like any other baby and should make all his milestones at the correct time (provided he has not already missed any). My dad said that 7 days after my first surgery I was already crawling and had been discharged. Second surgery I was discharged at six days post op.

With regards to growing up beyond that, my experience was very much identical to my peers. Parents often worry about things such as participation in PE. Honestly, PE is schools is designed to be as inclusive as possible. I only ever really struggled with cross country or prolonged efforts and even then I was not back of the class. Outside school I was a competitive swimmer of national standard for most my adolescent life(ending age 16).

I would suggest when you get to school, you have a sincere conversation with your sons teachers about encouraging his strengths and best support for his weaknesses. My parents never spoke to my teachers about my Fallot's and this sometimes lead to disagreements. The other thing I would suggest is make sure you are honest with your son about his condition and that age appropriately you explain it to him.The nurses at your paediatric centre should help with this and it maybe that the hospital has a clinical psychology service that can help you. Because I was so 'normal' for so long my parents rather put off (also I had some issues with continuity of care due to changing consultants so support for this process was not offered to my parents) having this conversation with me and this caused more problems than it solved. for example I became quite self conscious when I could no longer keep up with my peers in the pool and no one would engage in the conversation that this was because my pulmonary valve was failing. In an attempt to make me his normal princess my dad would say "I was not trying hard enough". This is a two edge knife. Saying this kind of meant that I really did work hard and do so for as long as possible- resulting in the belief I really can do anything- but the other side was a huge amount of confusion.

As I have stated, eventually my pulmonary valve failed and last Summer had to have it replaced in a second open-heart procedure. It is likely that at some point your son with also need further intervention- but let me reassure you that my symptoms prior to second op were pretty mild. Between 3 months and 20 years 8 months I had no complications or issues. The only thing that really stopped was the competitive swimming. I still attended Uni like any other young adult and was doing really well reading Physics at Manchester. Since I have taken up long distance running to manage my mental health condition and will be completing a half marathon in October.

Providing the repair goes smoothly, you son has faced the biggest hurdle he is likely to face and his life will be very very very very normal.

[NatSte in reply to Midgeymoo17]

Thank you Midgeymoo17 for taking the time to write! x

[Midgeymoo17 in reply to NatSte]

Also about life after repair.. I suggest you watch this video on the 2x Olympic Gold Medallist Shawn White who has repair tetralogy.

youtube.com/watch?v=9ffKBhM...(Not working as expected?)

[NatSte in reply to Midgeymoo17]

Thank you..just thank you!

[Lezzers]

Hi, I'm afraid I don't know anything about your baby's heart condition but you sound exhausted. Have you spoken to your health professional bout getting some help? I understand this is scary for you & I totally get you being on edge waiting for the worse & that is not gonna ease for a while even after surgery, but please consider yourself as well otherwise you will end up being the patient! I really hope all goes well for you xx

[NatSte in reply to Lezzers]

Thank you x

[clarehealsworldwide]

Hallo. I'm so sorry to read your baby has the condition and hope the surgery helps a lot. Wishing you and your family all the very best. Clare

[NatSte in reply to clarehealsworldwide]

Thank you Clare x