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sofia hannah

sofia hannah 07/10/2013 – 20/12/2013

Sofia's short but happy life

We were made aware that there was something wrong with my daughters heart at our 23 week scan, our twenty week scan showed nothing as being wrong. We were referred to the Royal Victoria Infirmary at Newcastle where we were told sofia had major heart problems. These included a major ventrical septal defect, pulmonary artery stenosis, a common valve- various problems. We were devastated. Sofia is our fourth baby, second daughter, unplanned, but still deeply loved and wanted.We didn't tell our family until she was nearly born, as we wanted to come to terms with it ourselves before having to deal with other peoples emotions. The consultants kept asking us if we would have chromosome checks but we didn't want to do that as we wouldn't have aborted her whatever the outcome, we wanted to go with the flow and hopefully have time with her alive, even if few hours.My Husband and I traveled over to R.V.I on Sunday 6th October to be booked in so that we were ready there for my induction/section the following day (we live 100 miles away).

She was born by c-section

We had numerous visits to be scanned at the R V I  and I must say the consultants were excellent. Edwards syndrome was mentioned to us as Sofia's heart problems were consistent with this syndrome, and I think I knew deep down, especially as the scans showed her hands clasped and the forefinger crossed over, and low set ears. Everything else looked perfect.Still, we were devastated to have this syndrome confirmed and to be told she had a 'nil life expectancy'. Our brave little girl then proceeded to have brief spells of  severe apnoa where she turned blue and seemed to stop breathing and just when we thought 'this is it', she would sort herself out and go another couple of days with nothing happening. She was up to 56ml feeds every 3 hours, breathing on her own and generally acting like any other baby- even shouting for her feeds when they were due etc.

The consultants kindly made numerous phone calls to the West Cumberland Hospital( Whitehaven) to arrange Sofia coming home to Whitehaven so that we could be nearer our older children- who were absolutely fantastic during this stressful time- and our family and friends, and they very kindly said we could borrow the Humicare machine because our hospital didn't have one.On Sunday  October the kindly took her to the Freemans hospital to check  what state her heart was in, so that we didn't have to travel to-and- fro over such  a great distance. they would discuss this with cardiologists in the following week and draw up a plan of action for the future-if there was anything that could be done.

On the Monday following , whilst we had finally managed to get the kids to the museum, we were called back to the hospital. Sofia's heart rate was over 200 bpm and there was blood in her nappy-she had developed nec and it was causing her great pain which had caused her heart beat to shoot up.She was started on antibiotics and food was withdrawn to protect her bowel. The day after, they told us her cannula's were failing and they where struggling to get any more in as her veins were basically 'rubbish' and that they had struggled with this right from when she was born. They asked if they could put a long line in so they could get some nutrition in her, which we agreed to, and they said they would put it in that tuesday night.When we arrived back on the wednesday morning , we realised they hadn't put the line in, which started to ring alarm bells, and then when the consultant said 'I'll just finish the ward round then I'll come and see you' we realised things were not good.

The consultant basically told us they couldn't do anything else for her. They couldn't get the line in because of the state of her veins, they couldn't get any antibiotics etc because of the same reason.They said they could try to  site it on her head but they didn't hold out much hope. Thats when we decided to just let her go, but they agreed to get her back to whitehaven for us if they could manage to get a cannula in so that she had some hydration  going in- basically sugar and water. They managed to get one into her arm at the elbow and she was transferred whitehaven to die near her friends and family. The staff at whitehaven were fantastic, we left the cannula in untill it failed, which it did- on the friday night at 10.30pm! It had lasted the longest of any cannula that she had had in.(she had been transferred on thursday 31st October) My dear friend stayed with me that night whilst we waited for her to fade(The hospital had provided a room on the ward where my husband had some sleep) The following morning she was still with us and fought on untill thursday 7th. This was doing my head in, it was bad enough waiting for her to die but to watch her starve aswell, was unbearable- especially as she was looking for food! Anyway, the R.V.I. suggested giving her 3 mils of peptisorb milk to see if she could tolerate it, it may have caused her bowel to perforate but she was suffering anyway we  felt we would like to try. 12 hours later she had shown no sign of blood in her bowel so they tried her with some more and 3 days later she was on 10ml feeds every 2 hours. This brave little girl has survived 10 days without food, 6 of those without water aswell. and was well on her way to recovering. 3 weeks later she was well enough to come home to the house , supported on oxygen, to become part of the family proper. What a soldier! On saturday 14th decenber we took her in to hospital because she developed a bad bout of the runs and we couldn't stabilise her sats levels, but we brought her back home on the monday as she recovered quickly and the cough she had had not developed in to anything worse, her chest x ray showed her lungs were clear. On the wednesday (18th) she was uncomfortable and didn't seem to settle, we couldn't get her oxygen levels good. We took her to the hospital on that evening, not expecting to be kept in, but they decided to  keep her in as she did seem very 'flat'. On the thursday they did blood teste that showed seriously high carbon dioxide levels in her blood. Thursday evening saw us arranging to take Sofia back to the Freemans to  get her heart checked to see if there was anything to be done. 3.30am saw us following the anbulance to Freemans (fri 20th december) where extensive tests where carried out. We where then told that Sofia's heart was not the problem, but her lungs- they where failing, had been for some time. and there was nothing they could do.Her carbon dioxide levels were 47. 20 kills an adult and thay were amazed she was still with us. When we went back in to see her after the consultants had agreed to get her back to whitehaven for us, we could see that she had had enough.They got sofia back home at 6.30pm, they removed the ventilator whilst she was in my arms, she tried 2 breaths, but died  in my arms, cuddled in, peacefully and without pain. It was a lovely, beautiful death and she was content. and she litterally 'fell asleep' after she had put her self into her favourite position, with her face turned into my chest.

Although I am crying my eyes out as I write this, both my husband and I are so pleased that we had this time with her, especially those few weeks at home with her sister and two brothers, and just wanted to say that we felt it was worth while to carry on with the pregnancy so that we could have this time with Sofia, despite what the doctors said. and we had much longer with her than we thought. Her funeral is on friday 27th. Both my husband and I firmly believe we will see our daughter again, the bible tells us she will be with us but not in heaven, but on the earth. The bible also tells us that she is not in pain, she is not suffering,she is simply as if in a deep sleep, and that is exactly how she looked when she died. 

All the medical staff that dealt with Sofia where fantastic, and once they got beyond the 'Edwards' and started to look at her as our daughter, not just a statistic, really got behind her and did everything they could that was 'sensible'- we never wanted an all out invasive approach but we wanted to do what we could that would make her comfortable-and we are forever gratefull to those people.

If you are going through this or just want to talk,please email me.

The time she had with us was not all doom and gloom, we didn't sit at home waiting for her to die, we 'lived' and did normal, happy things with her. Even in the hospitals, we had good times with her, even if overshadowed with sadness.

It was fantastic having Sofia in our lives.

As my friend put it, ' she will always be your daughter'.

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sofia hannah

Condition: T18
Relationship: mother