Life Stories

Minnie's Gift

We were so excited to be having another girl - a little sister for our daughter, Lilly.

After my 32-week check I went for a scan to check the baby's size.  There was a lot of fluid around the baby - polyhydramnios - so I was scanned weekly after that to keep an eye on things as it could be an indication of an oesophageal fistula (where the oesophagus hasn't joined up with the stomach so the baby can’t swallow).  I was a little worried but everyone seemed calm and confident.  Once born, she would have a tube fed up her nose and down her throat and an X-ray to check everything.

At 37 weeks the fluid levels were dangerously high and I was in quite a bit of pain, so I was induced and gave birth to our beautiful daughter, Minnie, weighing a healthy 6 lb 14 oz.  I have never felt happier; our family was complete.  I couldn't wait for Lilly to meet her; she looked perfect.  

An hour later the nightmare began.  Minnie started coughing and foaming at the mouth and began to change colour.  The doctors quickly took her to SCBU to do the tube test.

The doctor showed us the X-ray ... she did have the fistula.  When checking her he had also found a slight heart murmur, so she needed to be transferred to Leeds hospital for an operation within the next few hours.  My head was spinning; I couldn't really take it all in. 

Minnie was stable and comfortable, so I was told to rest, but lying listening to the ladies with their new babies on the recovery ward was awful.  I tried to express milk for when Minnie could eat after her surgery.  The midwife agreed to discharge me from hospital early so that we could accompany Minnie to Leeds.  She tried to reassure me that all babies have a hole in their heart which closes up soon after birth.

The drive to Leeds was hard; I was uncomfortable from giving birth and the city was unfamiliar to us.  It was all overwhelming.  When we saw Minnie she looked a bit better than previously, but she was wired up to lots of different machines.  We were told that she had been scanned by the cardiologists.  I desperately wanted to hold Minnie, but I didn't dare ask. I was scared to touch her, so I just stroked her little tummy.  I’ve never felt so helpless.

The surgeon operating on Minnie's fistula explained the procedure; she would be in surgery for at least six hours.  We walked down to theatre with her and said goodbye before handing her over.  All we could do now was wait.

The cardiologist arrived and we were taken to a family room.  Just when we thought things couldn't possibly get any worse ... they did.  We were told that Minnie had an extremely serious congenital heart defect called Hypoplastic Left Heart Syndrome - meaning that the left side was too underdeveloped to sustain life - combined with Coarctation of the Aortaand a small hole in the wall of one of the chambers.  It meant she would have to undergo major heart surgery three times before she was five years old.  Even if all surgery was successful, her life expectancy would be only 30 - at best.  I don't remember much else that was said; I couldn’t concentrate and felt I might pass out.  Why had no one seen it in the scans; why was this happening to us?  My worst fears were being realised: I'd had a baby and now she was going to die.  I just lay on the sofa sobbing.

Minnie's fistula surgery was a success, but we had to give her a few days to start healing before planning her first heart operation.  When I walked into the room it was hard to hold back the tears; her little face was all taped up and she was still heavily sedated and ventilated.  There was a large dressing down the right side of her body.  I didn't dare touch her - I didn't want to hurt her.

A week passed; visitors came and went.  I desperately missed Lilly.  Things had started to look up as Minnie was more awake and I felt like I could see a future for all four of us.  Things were going to be hard - and different to how we had imagined - but it didn't matter.  If she was only with us for thirty years then they were going to be the best thirty years we could give her.

The doctors were happy with her progress; in a few days they would remove the ventilator and I could finally have a cuddle.  However, when they did remove it she wasn't able to manage on her own, so the tube was re-attached.  The doctors explained it could be either a blood vessel wrapped around her trachea (this would involve another operation but it could be fixed) or there could be issues inside her airways.  Stupidly, I hoped it wouldn't be the blood vessel because I didn't want her to go through another operation; I didn't understand the implications of the other option.

I was feeling pretty low. We were still sleeping on the ward and it was very noisy.  I was trying my hardest to express and not being able to hold her was killing me.  I broke down.  The doctors agreed that she could come out for a cuddle; it was just wonderful. 

The scan revealed that there were no blood vessels restricting Minnie's airways - but she was missing a large section of muscles in her trachea.  The consultants needed to discuss Minnie's case with the specialists at Great Ormond Street Hospital.  There was a new sense of urgency as Minnie needed to have her first heart operation very soon. 

The specialists agreed that Minnie's heart was the most serious issue but she could stay in Leeds.  We had to wait until the Tuesday for the final decision on the right course of action, but one of the cardiologists warned me that they couldn't promise that everything would be okay.  I remember looking at her and crying; you always assume that they can fix everything, but it was becoming clear that Minnie had a very bleak future.

Later that day the surgeon came to see me.  It was during that conversation that I knew Minnie was going to die because I could tell he was preparing me for bad news, talking about quality of life, even if she was only here for a few months.  We discussed comfort care and I could see sadness in his eyes.  I felt dazed; I needed them to tell me that that they could make my baby better.

Tuesday arrived and we finally met with the surgeon to have the most difficult conversation of our life.  She was the leading paediatric cardiothoracic surgeon and she very calmly explained that, due to the serious nature of Minnie's heart condition, for the operations to be a success she needed to have good lung function and to be able to breathe on her own.  Due to the serious nature of her trachea problem that wouldn't be possible and this made her an extremely poor candidate for surgery.  The actual chances of her surviving were very slim; even if she did survive, the issue with her airway could not be resolved and she would be permanently ventilated.  And when it came time for the second heart operation it wouldn't work, so she would have been through extremely invasive painful surgery that carried a high risk of post-surgery complications, including infection.  In her weakened state she would not be strong enough to fight, so we would be putting her through a massive painful ordeal to either pass away a few months later in pain, or she would die on the operating table. Or we could decide not to operate, but to make her comfortable, enjoy her and let her pass away in our arms surrounded by love.

We were allowed as much time as we needed to take it all in, but we knew we had to do what was best for her, no matter how hard it was.  However, we wanted to make her short life count and asked if Minnie would be able to donate any organs.  The organ donation specialist nurses explained the whole procedure.  After a few blood tests we had to wait until the team were ready and we were ready to say goodbye.  We spent the day cuddling Minnie with our family, bathing her and making foot and hand prints.

On the Friday the doctors gathered in our room.  I could hardly breathe; I didn't want to say goodbye.  They placed Minnie in our arms and the ventilator tube was removed.  The next two hours were the most horrific of my life, watching my precious baby girl, who looked so tiny and perfect, slip away; it is impossible to describe.  At that second when her heart stopped beating mine was forever broken.  I am utterly traumatised by the whole experience.

After a few minutes we had to pass her over to be taken to theatre.  As they left the room I dropped to the floor sobbing.  A few hours later they took us to the family room where a cot had been set up.  Minnie looked so peaceful - like a beautiful china doll.  We held her together for hours.  I couldn't face going home to all her gifts and the cot in our room which was all set up ready for her.  What were we going to tell Lilly?  Leaving her was just awful.  It was a long painful walk past all the parents and their babies in the ward. 

The next few weeks were a blur of funeral arrangements and avoiding seeing anyone.  My whole being ached for her. Two of my friends had babies around the same time.  Surprisingly, I wanted to see them and hold them.  I needed to feel their little toes wriggle and smell that lovely new baby smell, even though I was in pieces again as soon as I left.

We were looked after extremely well by my GP and health visitor; the support from the organ donation nurses, family and friends was invaluable.  We were in such a dark place for such a long time; we are still dealing with it now, but the pain will never go away.  However, we couldn't be prouder of Minnie.  Knowing that a person is able to live a normal life because of her is one of the main things that got us through.  We know that it's not a choice everyone would make but people should consider it; the comfort it has brought us has been invaluable.

Earlier this year we were able to meet the recipient, together with her family, and had the honour of attending her wedding in May, which was very special.  We are planning to meet up again soon.

We held a ball to raise awareness of organ donation at the time when it would have been Minnie's first birthday.  We raised £14,000 for the neonatal unit in Leeds where she was cared for.  We are in the process of organising another one for 2018 when she would have turned three.  We will always continue to raise money and awareness in her memory.

Ami (Minnie's mum)