Admission to Barbour Ward & Charlie's Diagnosis

On our first day together after the birth, I was still in a lot of pain, but was in absolute awe of our beautiful baby boy. I couldn’t wait for Davy to come back to visit and also the grandparents.

In the recovery room after birth the midwife had helped me get Charlie latched on, as I wanted to breastfeed him. When I got moved to the general ward, I had to ask for help to even get Charlie out of his cot as well as getting him to latch. I felt silly that I just assumed he would latch on easily, but was determined to keep going. Davy arrived and so did the grandparents; everyone was instantly in love with Charlie!

I kept trying to feed Charlie through the day but was struggling to get him feeding for very long. After I had attempted to feed Charlie a number of times, he started bringing up a yellow/green bile. This continued on for a number of feeds and we kept informing the midwives as I needed new sheets for his cot each time. At some point in the afternoon, the bile started to change colour to a green/brown colour, so the midwife said she would mention this to a Dr.

A junior doctor came and spoke to me about Charlie and took him away for a quick examination. She came back and advised she was going to mention to a more senior Dr for another opinion but it could just be blood that Charlie may have swallowed during the delivery.

At this point Davy had gone home again to let our dog out and feed him and was planning on coming back up early evening to see us again. My mum and dad were still with me as my mum was keen to help me with establishing breast feeding.

A more senior Dr came to see me, along with the junior Dr who had checked over Charlie earlier on. They advised that they wanted to get an X-Ray of Charlie’s tummy and bowels to rule a few things out. I consented and thought it would be a few hours before we would be taken for this, but within 10minutes a midwife was showing me where to take Charlie for his X-Ray.

Once we got back to the ward, we waited about 15minutes before the Drs were back. They pulled the curtain around us and advised that they had shared the images with consultants at the RVH, and that they suspected something wasn’t right with Charlie’s bowel. It could be a perforation or twist in the bowel, but he needed to be moved to neo-natal right away and would be transferred to the Royal Victoria Children’s hospital that night.

I was in complete shock, crying as I didn’t fully understand everything and terrified that something was wrong with Charlie. My dad rang Davy and told him to get back as soon as possible and my mum and dad asked questions to the Drs as my brain had gone blank. All I could do was sit and hold my new baby boy; he was taken from me shortly after this to go to neonatal. 

When Davy arrived we both went to visit Charlie, he was hooked up with wires everywhere and machines beeping left right and centre. I was shaking and silently weeping and Davy was in disbelief that this was happening. The Drs came over and spoke to us about the journey to the RVH. They advised that once Charlie would be there the Drs were going to do a procedure of placing dye in his bowel to see if it was indeed twisted or perforated.

We sat with Charlie for a while and then the ambulance drivers came in with a massive incubator for Charlie. He was bundled into it and wired up for monitoring. It was agreed Davy would follow the ambulance as I had to stay in the Ulster. I was told I couldn’t go as it was too soon after the birth and if anything happened to me on route the ambulance personnel would be focusing on Charlie and not me. I understood but my heart was broken as again my baby boy was taken from me.

I was moved to a side ward, which I was grateful for as I couldn’t bare to be around other mums with their babies while I lay there without mine. My mum and dad again stayed with me and my brother and his fiancé arrived up in the evening. Davy’s mum and Dad met him at the royal to support him.

Late on in the evening Davy rang me with a Dr 

Irene Milliken. I put her on loud speaker and she advised that from doing the Barium Enema they could rule out a twist or perforation in the bowel. They now suspected a condition called Hirschsprungs Disease (HD). This was to do with the nerves at the bottom of his bowel and how they aren’t working right to push the contents of his bowel out. Charlie was admitted onto the Barbour Ward as they needed to observe and do more tests to confirm HD.

I was discharged the following day from the Ulster, so with Davy already at the Royal, my mum collected me and took me straight over to my boys. Charlie was in an incubator, on fluids and was having his vitals observed on a regular basis. He was also getting bloods taken on a daily basis and his blood sugars checked throughout the day. At this point I hadn’t been able to get Charlie latched on and the Drs were reluctant to let me try yet as they needed to examine him further. For the next couple of days Charlie was monitored and had three bowel washouts a day to prevent any build up which could lead to infections.

On the Wednesday the nurses said I could try feeding Charlie. I naively thought it would be easy but it was tough, I had no clue of what I was doing, the ward was very warm and Charlie was sleepy. As we were on a main ward, we had to keep pulling the curtains but this just made the ward warmer and I got more and more flustered that I couldn’t get Charlie to feed.

Eventually Davy got annoyed at the situation and asked one of the nurses if there was somewhere more private that I could be attempting to feed Charlie. We were moved to a side room on the Barbour Ward. At last I could try feeding Charlie and expressing as often as I needed without the fear of flashing to the entire ward.

Until Charlie latched properly, I expressed as often as I could to mimic a newborn feeding. It was exhausting, but I couldn’t wait to feed him and get him off fluids. The surgeons agreed to reduce the fluids so that my milk could firstly be drip fed slowly to Charlie.

Charlie wasn’t tolerating the milk and so although he had reduced fluids, he was put on a Dioralyte drip feed. They couldn’t risk Charlie becoming dehydrated, but this seemed to make Charlie worse and he began vomiting. It was heartbreaking as I didn’t know what to do and also panicked about him choking on his sick if lying down.

I was convinced it was the dioralyte which was making him vomit more, so eventually it was removed and Charlie was put back on full fluids. The vomiting calmed down and we eventually got some sleep, I think around 6am!

The next morning, the surgeons did their usual rounds of the patients. I joked it was a posse of Drs as at times there could be 7 or 8 all being updated on Charlie. Irene agreed that the dioralyte should have been stopped. They agreed that as the vomiting had stopped, the fluids could be removed to give us a proper chance to establish feeding. 

Unfortunately Charlie still wasn’t taking to feeding from me, so the nurses advised we could try feeding my expressed milk other ways. It could be syringed, drip fed again or bottle fed. I opted for bottle fed, although I had been told it could confuse him latching onto me, but I didn’t want to syringe my milk and we had tried to drip feeding. Thankfully Charlie was tolerating the small amounts from a bottle and through the night the nurses helped to feed him so I could get some much needed rest. Charlie’s blood sugars were constantly monitored but the following day Charlie began to feed from me, so the fluids were kept down completely. I was so happy.

Charlie had another procedure after a couple of days in hospital, a rectal biopsy, this involved 5-6 samples of his bowel being taken from the bottom section to establish if there are working nerves or not. It then had to be sent to Pathology for them to examine the cross sections of Charlie’s bowel and this could take a couple of days for the results.

In the meantime, we were taught how to do the bowel washouts by Laura and Emma, the stoma nurses in the Royal. They were so patient with us, more me, as I was petrified of hurting Charlie. We had been advised that if the catheter was pushed up against resistance it could either be a build of poo or it could be the bowel collapsed over. If we pushed too much it could be easy to perforate the bowel, so there were tricks and ways to use the saline water to push past any resistance.

By the Friday it was confirmed that Charlie has Hirschsprungs. Dr Milliken chatted with us about the next steps and advised surgery would be needed. However, they wanted Charlie to grow so that the bowel would be bigger to work on. We were advised the washouts would continue until Charlie was at least 3months old.

Eventually we were allowed to take our precious boy home. Although I was ecstatic I was also terrified. For over a week I had 24hour help with the nurses to care for Charlie and there had been a lot of ups and downs. Now it would just be me and Davy.

On the day of discharge the stoma nurse and surgeons wanted to make sure we were happy with the washouts. We both had to have a go in front of the stoma nurse, I mentioned that I was very nervous as I couldn’t get the catheter in as far as normal and didn’t want to push it. This was then fed back to the surgeons who advised that we should do another washout that afternoon with Charlie to make sure we were happy to be discharged. I was so cross at myself and then even more nervous as I knew it would have to be me who would do the washout later that day. Thankfully later on around 4pm, the washout went without a hitch and we were signed out of the Royal.

Waiting around to do another washout was hard work for both my boys!

Ready for home!

Our first week together had been a roller coaster of emotions, but finally we could bring Charlie home. That night was pure bliss, my bed was the comfiest bed on the planet and Charlie slept like a dream only waking a couple of times. There really is no place like home, Charlie and I spent the next few days getting to know each other properly before we let anyone know we were home. Then the visits began and didn’t stop for at least two weeks.

We soon realised this was going to be a long road ahead of us figuring out HD into our lives. Three months of washouts felt like a lifetime. At the start, after every washout we would over analyse the result and how it differed from others. To help remember previous results, I logged each washout in a diary.

Eventually we got into a rhythm of carrying out the washouts. Charlie also became more used to them although he wasn’t always happy about it. I would do the washout on my own in the morning and Davy would do the washout in the evening. We soon got our confidence and it became second nature. We could even tell when Charlie needed the pipe to release gas and poo in between washouts. I have to mention that Davy came into his own at this point. I struggled sometimes to get poo blockages washed out, but Davy could work magic, twisting the pipe, flushing saline and always managed to make sure Charlie was fully empty.

In those first few months, I had a lot of days of feeling down about HD, unsure of what the future held for Charlie and feeling sorry for us all having to go through this. However, I knew I had to get on with things. There were plenty of babies and families facing worse than we were. We just kept going, thankful on one hand for a diagnosis but unsure of what was next. So we tried to take each week as it came, with the 3month review as our goal. 

If you didn’t know that Charlie had HD, you would never have suspected. Our baby boy just kept growing and developing like any other baby for those long three months!!

Xx