TRIGGER WARNING: Please be aware that this story contains descriptions of a child undergoing an emergency procedure which may be upsetting to some readers.
Isabella was born with Tracheomalacia / Bronchomalacia, conditions which many of those born with OA/TOF also suffer from. Thanks to Isabella’s Mum, Charlotte, for sharing their story.
Isabella was all snuggled in my tummy and I had no issues through pregnancy apart from the threat of Covid. We had a natural birth at the lovely Epsom hospital practically on our own, just me, daddy and one nurse. Because of Covid, normal checks were not done.
We took in Isabella, gave her cuddles. It also gave us the time to take in the realisation we now have two beautiful children. Then in the quiet room daddy heard a wheeze, and asked if I could hear it too. I couldn’t but as I moved closer, I could hear the wheeze.
We asked the nurse to check her numerous times, the nurse said she was fine, and we thought maybe it was a buildup of mucus inside. We packed our bags and went home.
We couldn’t wait to take Isabella back home to introduce her to her brother. We were consumed with two children and lockdown trying to juggle this busy time we didn’t notice anything wrong with Isabella at the time.
I remember family coming to the window just to get a glimpse of Isabella, it made me very emotional. Once they left, I broke down, not being able to have our families in to meet our new addition.
Isabella was bottle fed the same as my son however she became very whiny and seemed unsettled. I thought maybe she couldn’t tolerate dairy like my son, maybe causing her colic and upset stomach. We visited the GP and eventually went onto non-dairy milk.
She was still very unsettled and soon we came to realise she really struggled to drink her bottles. We took advice from the doctors, to sit her up when we fed her and to make sure we had the correct teats. We tried every type.
It became confusing. She either struggled because it was too fast flow or too slow. She would suck the teat so much it would close or dribble all down her neck. We thought maybe she was too eager for her milk.
After many tries with bottles, we decided to try weaning slowly around 6 months. We thought if we tried her on little bits of food early it might help fill her up then she would have less issues with bottles, as they seemed to be causing her issues.
We started with rusk so she could suck the rusk at her own pace. We then started the weaning process starting with liquid type food and thickening the textured of food slowly. Once we got to mushy type food Isabella couldn’t tolerate it.
She would choke a lot. To the point I would have to lean her forward and tap her back for it to come out. This was starting to cause us a big worry.
This was not working for Isabella. I thought let’s try baby led weaning. This certainly was a revelation because she would nibble at her own pace.
However, just as we thought we were getting somewhere, the whole situation took a turn for the worse.
From this point forward many of my memories are fragmented.
I remember it being the middle of the night and we were trying to settle Isabella in her buggy. Something was wrong. She was extremely pale. Her ribs were flared and her breathing was very wheezy. You could see her sucking deeply to try and breathe. At the time we didn’t know what this meant. She kept seeming dazed as if she wasn’t all there and we knew we needed to call an ambulance.
The paramedics arrived and checked her over. They were not too concerned but said they wanted to take her in to get checked because of her age. She was around 6-7 months at this point.
Because of Covid I had to go alone in the ambulance with Isabella to A&E, thinking everything is fine, let’s just get her checked over.
I clearly remember leaving the back of the ambulance in no rush as they helped me into the hospital with Isabella still in her car seat. East Surrey is a smaller hospital and we were buzzed straight through to children’s A&E.
A nurse lifted Isabella from her seat and I knew straight away something wasn’t right. She was very pale and non-responsive. They rushed her through the double doors and said to me your daughter is very sick. I was thinking to myself, but the ambulance crew said she was fine!
We were in the emergency room. Isabella was laid on the bed, nurses were trying to get a vein as they needed to get fluid into her as they said she was dehydrated and very sick.
I was very quiet and in shock. I trusted them. They knew what was best and they had to do their jobs. I was so confused and didn’t know what was happening. Everything was so fast.
They said I couldn’t go near her as they had to work on her so all I could do was watch. One younger nurse tried to support me but there was so much noise happening around me I couldn’t take in what she was saying.
I was then told I had to leave the room now! I refused. I’m not leaving my daughter. The doctor said that they were going to have to expand her stomach to put a tube down and this wouldn’t be nice to witness. I left and stood outside the doors taking and a nurse followed me trying to comfort me. She was a lovely lady but my brain was chaos. I just needed my daughter. I felt guilty now! I just stood back instead of being closer to comfort her more but I didn’t want to be in the way and compromise the staff being able to give her the best care.
I went back in to see Isabella, not taking in that she was now on a ventilator. I was beginning to feel faint. They were asking me questions, but my mind was too chaotic to answer or remember. I then got told we need to transfer to St George’s hospital.
I don’t even remember the journey to St George’s or when my husband even arrived but I was glad to have him by my side. We were taken to the ICU and Isabella was put right next to the nurses station. They took great care of her. They seemed to be confused as to what was going on with her. They had multiple different consultants checking her, she had x-rays and bloods. We were fully informed of what was going on at all times, but ICU is an odd environment to be in and we were finding it hard to take everything in.
Only one of us was allowed in at a time due to Covid so we had to take turns to sit beside Isabella and comfort her.
Looking back I feel the ICU is its own little bubble where we all have a rollercoaster of emotions. We spoke to other parents in the unit and we would all share our stories with one another. You could tell other parents had similar emotions.
All the days seemed to roll into one.
We knew she was safe in ICU, but it was still difficult as we were not allowed to stay with her at night. Seeing her swollen up like a puffer fish due to the ventilator and not being able to hold her. And if you did hold her, could that make her worse by moving a tube or unsettling her?
In the ICU it was discovered Isabella had suffered from aspiration and one lung was filled up halfway with fluid.
She was being checked multiple times by respiratory consultants for her wheeze and I remember them showing me her x-rays. The wheeze which we had always heard from birth it felt like confirmation that we were not going crazy.
They asked us multiple times, when did this start? We told them from birth. They were shocked by this and couldn’t wrap their heads around why it wasn’t picked up from the moment she was born.
Slowly they began to wean Isabella off the ventilator and we finally got to hold her again. She was very swollen, but I knew, and I always knew deep down that in the ICU she would be okay.
After ICU we moved to the children’s ward where Isabella had to have her own room because she was very vulnerable to infection. We still had the set rule of one adult at a time but we did stand our ground against this as we had multiple different consultants and nurses coming to visit her. We had been through a difficult time and we needed to be with our daughter together.
As well as spending time with Isabella, we also had to juggle our time at home with our son. We knew this was affecting him too. Family helped us out and kept him distracted with new toys and positivity.
Isabella was on a feeding tube and had to have injections in her legs to prevent blood clots forming after being on the ventilator. By this time Isabella had learnt to do tummy time and sit up in hospital which we were so happy about.
Nurses loved Isabella but we couldn’t have any visitors. We would sing to her, play peekaboo, trying to entertain her as she got stronger. We started to poke a look out the door as it was getting closer to Christmas and the decorations were going up which Isabella loved to look at. At this point it was also getting closer to my birthday and I just wanted to be home and have my family all together again.
Isabella was checked by dietitians, ENTs and respiratory consultants. We were learning to use the feeding tube as we thought we would be taking her home on one as she was refusing to drink the milk from a bottle but then she took a turn for the better.
ENT supported us with Isabella’s feeding. We had to bring in all different teats to test and check for the safest option to prevent Isabella aspirating again. They taught us the best position for her and listen to her swallowing and know if it was safe. I was amazed how they was know this by listening to her swallow and in the end Isabella managed to feed well on the correct teat.
Before discharge, a follow up appointment was organised with the respiratory team as they were still unsure what was causing Isabella’s wheeze.
We left the hospital grateful for all staff support along with great care we received and anxious for Isabella next steps.
Isabella left St Georges just in time for my birthday and we got to spend Christmas with our son as family. We were finally back together which was so emotional.
In hospital they had taught me how to give the injections to prevent any blood clots forming. I couldn’t wait for that time to be over. Making her cry every night felt like torture and she had already been through so much.
We thought it was home sweet home and that it would only be up from here but Isabella was a vulnerable child and ended up in A&E a lot. The staff started to get to know Isabella and her condition. A&E wait times involved having to have a lot of patience.
Later we had an appointment for a bronchoscopy. Before this procedure I had to starve Isabella, which was not easy for a little baby.
Her consultant diagnosed her with Tracheomalacia.
We were told she had a floppy airway all the way down from her throat into her lungs.
In following appointments we developed a care plan for Isabella. This explained in medical terms her condition, her medicines, her past and her conditions. It also explained how to deal with her in stages of her breathing, from mild to medical emergency.
This has been a god send in any emergencies. The plan really helped the staff understand Isabella’s history and allow them to give her the correct treatment, making the process quicker and smoother.
We had one diagnosis and now had to wait for another.
Isabella had a videofluoroscopy (an X-ray that looks at the way your swallowing works), she got to sit in a chair and drink chocolate milkshake which she was over the moon about.
As she drank, the x-ray video showed her swallow, and we could see her aspirating the liquid into her lungs. This meant Isabella no had to have thickener in any of her drinks going forward to stop the aspiration.
She still is having to have this to this day.
It has been a huge learning curve for all of us and really has affected all our families lives. We have had to learn how to take care of our child with this condition. I’ve learnt all the signs to look out for. I have learnt how she breaths, the way her body changes when she is working harder and how to monitor her even when tiredness takes over.
As a mother to a child with Tracheomalacia, I feel this condition grows with Isabella and as she grows her body copes better. As a baby she would overcompensate until she would get too tired to breath, which would then become a life-threatening emergency.
She is our happy wheezer because she copes with her condition so well!
