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​When your baby is poorly, being able to be close to them makes all the difference.

News   •   Jul 21, 2016 10:44 BST

Little Elena-Mai now

On the 6th December 2015 our daughter Elena-Mai was born, weighing a healthy 8lb 1oz. She was overdue by seven days, but all of my pregnancy scans showed a healthy baby, and we didn’t think there was anything to worry about. We were over the moon with the new addition to our family.

We noticed throughout her first day that she wasn’t drinking much milk, but as we were first time parents we didn’t think this was out of the ordinary. But on the day Elena-Mai was due to be discharged from hospital, she was instead rushed to Special Care and placed in an incubator on full oxygen, after the nurses noticed her oxygen saturation levels were low.

After four days of treatment, her levels still weren’t improving so we became increasingly worried as they ran tests to find out what was wrong. The doctor at Northumbria Specialist Emergency Care Hospital heard a slight heart murmur and told us Elena-Mai would need to be taken to a specialist hospital for further investigation.

Still not even a week old, she was taken to the Children’s Heart Unit at Freeman Hospital in Newcastle upon Tyne in an ambulance. There we were told Elena-Mai had a heart defect, called total anomalous pulmonary venous connection (TAPVC), which meant the blood wasn’t flowing properly from the lungs to the heart, and around the body. The consultant said Elena-Mai would need open heart surgery.

When Elena-Mai’s dad, Andrew, and I found out how poorly she was, we were devastated. We found it hard to understand how our baby, who was so small and new to the world, had to undergo something as serious as open heart surgery.

We were allowed to take her home, but we couldn’t take her out as we had to make sure she didn’t catch an infection. We were given a number to ring if Elena-Mai turned blue, which is something that no parent should have to worry about.

We had regular appointments with her health visitor to make sure she was growing, and at first things seemed promising as we were feeding her every three hours and she was gaining weight. But in February we had to rush her back to Northumbria Specialist Emergency Care Hospital, when she turned blue after developing bronchiolitis. She was fed extra calorie milk and thankfully we were able to bring her home after a day in hospital, being told to bring her back for a check up on 16 March. However her health slowly worsened, and some nights it was so worrying that Andrew and I would sleep at the bottom of the bed next to her cot, so we could make sure she was still breathing.

When we took Elena-Mai to her check-up, we were told to take her to Freeman Hospital immediately as her breathing had deteriorated. We had five days to wait before the surgery, but we didn’t want to leave our little girl alone at the hospital. So it was such a relief when we were told that we had a room to stay in at Scott House, a ‘Home from Home’ run by The Sick Children’s Trust and based just a short walk from the Children’s Heart Unit.

We ended up staying at Scott House for ten days. Instead of having to travel from Berwick to Freeman Hospital we were able to stay just two minutes away from Elena-Mai. When your baby is poorly, being able to be close to them makes all the difference.

Elena-Mai came out six days after her surgery, and since the operation she's like a completely different baby. She's now drinking her milk well and gaining weight and she’s now so strong that we can take her out. It feels so good to be able to do all the special ‘new baby’ things we wanted to do before, but couldn’t because she was so poorly.

Elena-Mai had her six week check-up after her surgery on the 6 May and they were really happy with her progress. We don't need to go back until November, where we will find out whether or not she needs more surgery. But we have our fingers crossed that her heart will have strengthened enough that she won’t need to return to the hospital, and that will be it for Elena-Mai.

We would have found it so much harder to cope with the stress of Elena-Mai’s heart surgery without The Sick Children’s Trust and Scott House. We couldn’t be more grateful for the support the staff at Scott House provided. They made our lives that bit easier in such a stressful time.

Melissa MacDonald, Elena-Mai’s Mum

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