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Baby Zian alongside sisters
Baby Zian was diagnosed with Patau’s syndrome, a serious rare genetic disorder, and died just 5 days old.
Dad Nelu describes the care they received from Little Harbour

From their initial visit, their precious days with Zian, through bereavement and now looking to the future.

"We hope that by sharing our journey somebody, somewhere, who may be in a similar situation will be comforted by our story and realise they are not alone and that there are wonderful people willing to help.

We know that Zian came into our life for a reason: to change our way of seeing life. We don't believe in coincidence and we don't believe that it was random. We believe that he came at the perfect time, and he changed our lives in a good way. 

Baby Zian being held
We first found out about Zian’s condition (Patau’s Syndrome) during Andrea’s pregnancy. We were scared when we first found out as we didn't know anything about it, to be honest we didn't know that such a syndrome even existed and we were very afraid of the unknown. 

We had lots of extra scans and tests and it was explained to us in detail what the problems were and the risks. Despite knowing about his prognosis Andrea and I decided that we would continue with the pregnancy.

As time went on during the pregnancy we got more and more nervous about how we would manage to spend quality time with Zian and at the same time comfort him but God didn't let us suffer too much, He sent us one of His angels to support us. 

Outreach Sister Jo Bennett came to us with the suggestion of referring us to Little Harbour children's hospice. We didn't even know this place existed and we didn't know how to react. After she explained to us what the hospice was and how it could help we decided to visit for ourselves.

We first visited Little Harbour three weeks before our due date. We were so impressed by the place, all the staff came to say hi during our visit, they were all so friendly.  I felt a little uncomfortable,

I kept wondering how it was possible to see such lovely people all in one place, it felt as though it was all too good to be true. 

After we left that day, we were silent, we realised what effect Little Harbour had had on us, we didn't know if we would return but in our hearts we had peace.

Quite honestly right up until he was born we had hoped that God was going to change the situation and we would have a healthy boy, but God prepared us something even more precious."

Shortly after Zian’s birth more tests confirmed the original diagnosis that Zian had Patau’s Syndrome. This condition occurs when there is an additional copy of chromosome 13 which severely disrupts normal development and, in many cases, results in miscarriage, stillbirth or the baby dying shortly after birth.

Patau’s syndrome affects every single cell of the body and unfortunately for Zian it was severely affecting his heart.  

"We knew we wanted to value every single second of Zian's life but the hospital room we were in was small and dark, there were tight restrictions on visitors and in the back of our heads we knew Little Harbour was there and could be our safety net so we decided that that was where we wanted to be."

Nelu and Andrea moved to Little Harbour with Zian, his older sisters Anastasia (4) and Sophia (2) and Nelu’s mother (Zian’s grandmother) where they could make precious memories, invite members of their Church community to visit and have cherished time together in a homely environment.

I can't explain in words how happy I am that we could come here. We had the most beautiful 5 days of our life. 

"Firstly at Little Harbour we could all be together, our whole family, and we could create lovely memories together. This is the most precious gift we received from God. 

Secondly, we met the most beautiful people here. They made us feel safe, comfortable and loved. We couldn't believe how blessed we were to be here. 

Zian's baptism at Little Harbour
There are not enough words to describe the staff at Little Harbour, they are true superheroes and Little Harbour is a place that you will never forget.

We had the chance for Zian to be baptised at Little Harbour and we were allowed to have our Priest visit at any time. We prayed together, we laughed, we sang and when it became too emotional we cried. 

My mother (Zian’s grandmother) was able to stay with us too, she doesn't speak English but she didn't need to, because the lovely staff are mind readers." 

Zian died, just 5 days old, on 3 September 2021.

"After Zian’s death everything was meticulously arranged for us, we didn't have to worry about a thing which meant we could share precious time with each other. We were amazed to see Natalie and Claire, who took care of us together with the rest of the Little Harbour family, at Zian's funeral. 

We came back to Little Harbour to visit a few months later and we were reminded of that same feeling we had when we first visited, this place is a piece of heaven. 

We want to thank everyone who helped us: all the doctors, nurses, Mel the amazing midwife who came in from her holiday specially to assist Zian's birth, and especially to our Little Harbour family."