Patrick

Patrick was born on 27.11.2016 after 12 years of trying to have baby. My Labour was planned because I had increasing fluid around him. I was in labour for over 18 hours long but I didn’t progress well so they did C-Section. He was born with rash over the body, temperature and he needed Antibiotics but overall he was fine. The paediatrician in hospital made recommendation to cardio department to check his heart because they heard something in background just make sure everything is fine. The scan in that time didn’t show anything.

 When he was 17 days old the midwife came to check Patrick but she found out he was breathing too quick and sent us straight away to the hospital where they already was waiting for us to arrive. They found out that he needs emergency heart surgery. In a short time they told us twice there is a big probability he will not survive because he was so weak and small. Straightway they took him to Intensive care and gave him anesthetics to put him to sleep because they said he’s too weak to be awake and needed help with breathing. I couldn’t hold him anymore; it was the worst thing that could happen to us. Then we had to just wait for all the results and what happened next. After hours of waiting we met Cardio consultant and he said that his conditions are rare and he tried to manage surgery for him as soon as possible. Next day morning on 15.12.2016 we flew to the Evelina hospital in London where they tried to manage surgery for him for next day. But when we came there they said he had a chest infection and they couldn’t do the surgery yet. They took a sample from his chest and we had to wait for results. Finally they said they can’t wait any longer and they did the surgery on 22.12.2016. He was in the theatre for 9 hours. This time was the worst ever. They repaired - Post repair of interrupted aortic arch type B, closure of VSD and ASD. He did so well and his recovery was like a miracle for us. 31.12.2016 we flew back to Belfast. Patrick stayed in hospital for 5 more days and in this time we met an immunology consultant and there we found out our miracle baby has 22q.11 microdeletion. At that moment it was like everything ended for us. Because they said they don’t know so much about this condition and we just need to wait what will bring us the future

In February 2017 we met Dr.Dabir from Genetic clinic and he told us more information about 22q and he explained what's happening and that he needs to see some professionals and to do more checks. He gave us a positive attitude and he said there is nothing to worry and he can have a normal life just with small limits. And here we receive information about Max Appeal and he said they will help us to get answers. It took us some time to get in contact because I was so overwhelmed and I couldn’t write or talk about that. And this was a really good decision because we found out that we are not alone in this fight and there are more people like Patrick. 

In a few months he had his palate checked, kidney, immune system, we saw a dietician consultant because his weight was very low and he got high energy milk.  

 He was referred to the paeditrician community consultant.

 In May 2017 I started to make plans to go slowly back to work for a few hours a week and at the same time we found out that Patrick needed heart surgery again but this surgery was planned and we could prepare it. 

So on 10.8.2017 we flew to London again. We had a nice weekend before surgery there and on Monday on 14.8.2017 Patrick went for second surgery – Severe LVOT obstruction post Ross Konno procedure and in near future he will probably need more surgeries. Patrick was in the theater from 8am until 6.30pm. It was horrible nothing to know all this time. Afterwards we spoke to the surgeon and he said that the surgery went well but there was a complication and they couldn’t stop bleeding and so they had to wait until it was safe for him. He was struggling with oxygen and he denied food. Five days after surgery he was moved to the normal ward. On the same morning he accidentally removes two cannulas from his head by himself, foot and he changes his behaviour immediately. He started to eat, smile and become a happy baby again. 

Before he turned one year old we spent a lot of time in hospital or A&E with chest infections or bronchitis. After that he was diagnosed with asthma, lymphopenia and recurrent Chest infections and he received an inhaler so we didn’t need to go to hospital so often. His health is up and down and affects his well being, eating and sleeping.  

When he isn’t well he takes only milk and it still happens also he is 4 already. He has better days when he eats something.

I think we were really lucky that he got diagnosed so early and so we could focus on his health and so he was seen by physiotherapy, LSP and OT very early and this helped him to progress. 

Patrick’s progress was very slow; he held his head without support when he was almost 5 months old. He never crawled. He started to sit without support when he was almost one year old. Patrick started bum shuffling when he was almost 2 years old. At the same time he was able to pull himself up to stand for a short time. 

His paeditrician recommended Patrick to the Mencap for Yearly program and we got lucky. Patrick got placed there in September 2019 and so his journey continued and there he met new friends and he had therapies on daily base. In November 2019 he made his first steps there and afterwards took him while walking by himself. He said his first words NO and MUM. And learned more makaton signs. 

In September 2020 he started nursery in a special school in Belfast and he’s doing so well. He can walk short distances and he gets tired quickly and needs to relax. He is using a communication book to say what he wants to do or use signs. He still needs help with everything such as changing nappies, clothes, shoes, helping him to sit in a highchair, helping him feed etc.. 

In October 2020 they removed all his teeth because he didn’t have any enamel and they just crumbled in his mount. His immune system is stable and due to shielding he wasn’t sick so often and this was really positive but it didn’t help his mental health and he started to be upset about everything. So we asked for help and now he has a schedule, he is back to school and this helps him to get in a better mood. 

Patrick loves his friends from nursery and every day he wakes up, he shows them with makaton sign - friends and asks if he is going to see them today. He is such a happy and sociable child. He likes to play with his small brother, who isn’t so small anymore and Tony helps Patrick to go up, bringing toys which Patrick can’t lift. They do everything together; play on the trampoline, water tray, slide and more. 

He is our small miracle and we are so happy to have him. Patrick went through so much already and he surprises me everyday how he is still so happy but he has this experience in him. He doesn’t like going to the hospital, or being touched by professionals and he gets upset. In the future he will need heart surgery again and so we try to enjoy days like this and try not be overwhelmed.  

We constantly struggle with constipation, where he takes movicol, sleeps (he wakes 5-8 times per night crying and a consultant from a respiratory clinic, things that are night terrors) and eating but we try to be positive and hope that everything will improve soon.