told by his mother Eliamara 

Nicholas its a brave and a very bright clever boy, he brings joys and happiness to as every day and give us reason to believed in good reason to live . He also my second son, he has a sister called Isadora, 4 yrs old than Nicholas. Which’s loves him.

Nicholas was diagnosed with hypoplastic left heart syndrome when I was 24 weeks of pregnant.

When my husband and I was told about Nicholas condition, it’s was a massive shock to us, one we never heard about this syndrome before and also because we didn’t have any case on our family background with a heart issues. The news was devastating to us as a family.

We have been offered 3 options , firstly was abortion, or let him born and then not intervention and finally the operation, we decided to give a change to Nicholas fight for himself, the third option the operation. Nicholas born with 37 weeks , but he didn’t had the weight that was necessary to do the first  operation called Norwood, so then the doctors decided to make a operation  called hybrid after 12 days that he was born,  so then he could grows and gets the weights he needs (3 kgs). So they could try the Norwood.

Nicholas had to wait for the next surgery at children’s  hospital in Bristol, until next operation, he had to fight for his live not once but many times during his time there, he contracted Sepsis, also had clot , went to cardiac arrest.. all before the Norwood  surgery. After almost 2 months the Doctors decided that was time to operate Nicholas and make the Norwood .  Almost 12 hours of surgery; we handed Nicholas to them by 8:30 and was able to see Nicholas around 22:00pm  the first 72 hours was very tough to us , but Nicholas with God’s permission  and the hard work of the doctor’s proved to us he was here to fight, and he was a good fighter.

Because of Nicholas air ways was very narrow, the doctors had to take a decision of cut one of his vocal cords, so they could pass the tube through to intubate. So he had paralysed cord because of this decision and high risk of aspiration food  and drink .

Nicholas had to be with NG tube to be fed during 18 months.

He didn’t get the  chance to be breast feed or bottle fed… he had to learn how eats  solids and drink  with the left vocal cord palsy . That was another challenge to him. He lived at hospital for 4 months,  he first came home on Christmas Day, but he needs to return in the evening to hospital , the next day at boxing day, we had an amazing news that Nicholas was discharged from hospital, (this was ours gift from Christmas Day)and  we only need to come to do check ups , that was a best day of ours life’s, and Nicholas did really well.

With 8 months Nicholas had the Glen surgery and that makes Nicholas growing up. 

When Nicholas completed 4/5 years old we have been told that he will need another operation before the final one which is called Fontan , he had to have a repair or his artery, because was very narrow ,so  last November 2023 they did the surgery, but on the check up 3 months later we have been informed that the surgery didn’t work well, so he might need a stent instead the Fontan.

Already Nicholas had 5 surgeries, 4 open heart and one in his throat, to help him with his airways, Nicholas is doing really well, we just had a CT scan , and we are waiting to the results and the decision of the doctors for the next steps for Nicholas.

We believe God have a plan for Nicholas and we have faith that God have the best for Nicholas future.

Everyone that is involved with Nicholas shows so much love and care with Nicholas at hospital . Nicholas  favourite play therapist Michelle’s from Dolphin ward, mentioned about Molly’s Dolls for Nicholas, she makes Nicholas days at hospital much easy when his there.

We are so pleased with all care and love Nicholas has had during his heart journey at children’s hospital. Also with all the lovely people we met there.

Once again thank you for this lovely gift that you have send to him. It’s was very special to him and for us.

It’s not an easy journey for sure , but is worth .

Hope Nicholas story can give to new parents on this path a hope future for there little ones.

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