Hope from The Heart

Stories of Hope and determination as told from the heart and love of Parents

Giving hope to other families from Parents who know the struggle is real and states there is Hope.

After the main shock that your child will be different, will have needs, you can read here to see there is a light at the end of your tunnel

This is when you have mastered the task needed to look after your Child

Read below from Parents who have gone through it and out the other side

A mothers instinct is never wrong

When you find out you are pregnant, you are excited beyond measure.

Maybe a little scared, will I be a good mum? Will I be able to carry this baby to term?
You eat and drink all the right things, you take care of yourself and in turn hope that this is all you need to do to make sure this baby growing inside you is happy and healthy.

You get warned about things like Whooping cough, vitamins, and minerals intake.
You worry about whether the baby is growing well and gaining enough weight. You worry about them before they are even born and will continue to do so long after they are born.
Sometimes the thing we worry about is the thing we never knew about, something we had no idea existed.

It was Christmas eve 2015. I had dropped my son off at his dad’s house and was ready to leave with my partner and go home. I had realised that I hadn’t felt Erin move much that day, but in the run-up to Christmas, my mind was on other things.
I remembered the talks and information about how to recognise when something isn’t right, and lack of movement towards the end of the pregnancy is one of them.

People believe that babies don’t move much at the end because of a lack of room, but this isn’t true
So I went to the hospital, and I was strapped to monitors and Erin was having a rough time.
I mentioned that I had been losing fluid prior to this and that I was concerned it was amniotic. The fluid was checked and came back clear for Amniotic fluid. So that was that, or so I thought.

Whilst the heartrate of Erin was being recorded it became apparent that she was in distress. We were taken to the delivery suite for further monitoring. Whilst there we became aware that I may need to be induced. Time went on and a monitor was placed on Erin’s head. But the monitors didn’t show I was in labour but believe me my uterus had other ideas.
I was suffering from strong contractions and was dilating ready for birth.
Labour began in earnest, and within moments Erin made her appearance. She was struggling a bit, unable to clear the secretions she was bringing up and needed to be suctioned. This bit is hazy because of the pain relief I had.

When I got her back in my arms she was all pink and sleepy. We were taken to the ward and my partner went home to get some sleep and I was left on the ward with my new baby.

A mothers instinct is never wrong. We know when something isn’t right and that night my mother’s instinct told me that something wasn’t right. Erin kept blowing bubbles, and I was constantly wiping her tiny mouth. I told one of the nurses that came onto the ward and she told me that they encourage the babies to get the secretions up and out themselves. Fair enough I thought but that didn’t sit well with me with regards to Erin.

Erin continued to blow bubbles, but this time there was something different. Her face went a horrible colour, her lips had a grey blue tinge and I knew, I just knew she was in trouble. I pressed the buzzer for the nurse, but I knew they wouldn’t get to me in time. So I carried my 6lb 4oz newborn down the corridor to the nurses station. She was still blowing bubbles.
A nurse came out and saw me and asked if I was ok, I just managed to shake my head look down and see my baby blow a massive bubble and collapse in my arms.

That was the last time I held my baby for nearly 2 weeks. And the first time I heard about TOF/OA,
The Doctor on duty x rayed Erin and when they tried to place an endotracheal tube it wouldn’t go down properly. I was told that Erin had TOF/OA. I had no idea what this meant and I was absolutely hysterical at this point and couldn’t take in any more information.

I sat next to her incubator as much as I could through the night, I couldn’t sleep.
She was hooked up to monitors and fluids and there were tubes and wires and in the middle of this was my baby girl.
Christmas Day came around, I was looking forward to spending it with my family and my newborn.
Instead, we were waiting for an ambulance to take her to St Mary’s in Manchester. The ambulance came and myself and my partner went after the ambulance. To see an ambulance all blues and twos knowing that your baby is in there is horrible. Absolutely devastating.

We got to the ward and then we were taken to her incubator.
2 days later Erin had surgery for the repair. Luckily she had a short gap, but her trachea and oesophagus were still attached. The surgery went ahead and Erin started the long road to recovery.
Nil by mouth and tube fed for a few days. After about a week or so we were able to feed her, so I started pumping for her. Every 2 hours I was awake more than I was asleep.

Erin stayed in NICU for nearly 2 weeks. Her chest drain came out and she was taking oral feeds.
When we got the chance to bring her home it was amazing, we were scared though, we learned CPR so if she needed it we could help her.
The repair had gone well, and all checks came back ok. Apart from a clicky hip, one vertebrae the wrong way round and hypermobility, my baby was coming home.

As Erin got older we had to be careful when feeding her. Her milk had to be given from an anti-colic bottle with a variable flow teat. This way she could control how much she took in. We had moments when she would have a feed and then her colour would change. We were coming back from shopping and she was in her travel seat and Erin had just had a feed. Next thing we see that her lips have gone pale blue all around. I panicked and I thought she was going into cardiac arrest. We laid her down on the landing of the car park stairwell, a lady rushed down to the shop below to buy a blanket to lay her on. My partner rang an ambulance and they came and checked her over. We found that this was more likely a vagus episode, where the vagus nerve was affected and when the wind she had cleared then this cleared.

As Erin started solids we had to be more careful than other parents. We had to make sure what she ate was melt in the mouth or easy to swallow. We tried certain brands of food but they were not ideal for tof babies. I bought Ella’s Kitchen pouches and Erin loved them and more importantly, she could manage them.
Now we have to make sure she is watched while eating and has her food chopped into smaller pieces than other children may have.

Erin still coughs and splutters especially if she drinks too quickly and while she is eating.
The Surgeon told us that Erin’s oesophagus is like a funnel shape so as she was developing the top of her oesophagus was developing ok and the bottom didn’t develop the same.
So this means that eating and drinking means that she can fill the top of her oesophagus but this means there is too much to pass through the smaller gap in the oesophagus caused by the surgical repair and scarring.

We are careful about what she eats and drinks and we always will be. The nursery Erin is in are all pediatric first aid trained and trained by Millie’s Mark and she always has someone with her at mealtimes.
The main thing from this is that we had no idea that Erin was a TOF/OA baby. Usually, there is excess amniotic fluid caused by the baby’s inability to swallow it. We didn’t have this, in fact, I was losing fluid. When we had the final scan it showed a very shallow amount of amniotic fluid.
I didn’t know that Erin was a TOF/OA baby until she collapsed in my arms.
But now we know, and we are all learning and doing the best we can.