Monday, 9 February 2015

Heart Week 2015 || Lagan's Foundation : An Introduction



When we first brought Martha Grace home she was feeding every three hours; we'd try to feed her orally to begin with and whatever she didn't finish we would give her through her NG tube. It was such a soul destroying process especially as Martha Grace would normally vomit most of her feed anyway...at my lowest I can remember looking at the clock and seeing it was 2:30am; it would take an hour to complete that feed and then I would be getting up at 5:30am to do it all again for an hour...to then finally be getting up for the day at 7:30am. I don't know how I functioned (yes I do, I had my Mam to help) that level of exhaustion can only be likened to torture. 

As you are all probably aware by now this week is Heart Week, but a Charity that you may not be aware of is Lagan's Foundation I'll be sharing their work over on the blog all week; today is Lagan's story as told by her Mummy, Carren.

Baby Lagan was diagnosed with Complex Heart Defects in September 2010 during an intrauterine  Fetal Medicine Scan at 22 week. She was born with an Interrupted Aortic Arch type B, Large VSD (like Martha Grace) Sub Valvar Aortic Stenosis, Aortic Valvar Stenosis and Dysplastic Pulmonary Valve. 

On the 11th January 2011, Lagan was born in St Mary's Hospital, Manchester, a brilliant 7lb 5oz. She was whisked away to NICU where she was looked after incredibly well. When we went to visit her we could not believe there was anything wrong she was perfect. On the 12th January we were told they
were going to transfer her by blue light to Alder Hey Children's Hospital in Liverpool for surgical review. That evening Lagan left the comfort of Saint Mary's and embarked on her 30 minute journey to Alder Hey Children's Hospital, Liverpool. After a long 24 hours Lagan, her dad and I were reunited at 7pm on Thursday 13th  January. A long week passed and Lagan began to deteriorate throwing very odd blood gas results and rapid breathing. After a week of nil by mouth Lagan was just 6lb 2oz on the morning of her surgery. The surgery was a success and after 7 days Lagan finally came off the ventilator, this was probably the most stressful time as we had to will her to take over the job of breathing by herself again.

The same day Lagan was transferred back to K2 and started her long road to recovery. It became evident quite quickly Lagan couldn't cry. Despite constantly asking why she could not cry we were told that it was just bruising from the vent and this would improve shortly, however it didn't. One day one of the ST Doctors who had just returned from holiday, raised the alarm that she may have had vocal chord damage due to the operation. Something that had not been discussed with us as a possibility. Immediately, Lagan was placed as nil by mouth again and a Nasal Gastric (NG) tube placed to minimise any chance of aspirating should the vocal chord indeed be damaged.

After investigation it was confirmed, Lagan had left vocal chord damage. We were unsure if this would be permanent. But for now she could only be fed via the tube. Up to this point Lagan had been breast feeding. I was devastated. Lagan's voice slowly grew and we were moved on to thickened fluid to allow her to feed orally. 
Eventually after 6 more weeks we were discharged. We arrived home early afternoon and waited for everyone to return home from school and work. Everyone was so happy. This was to be short lived, just three days at home Lagan woke up in the middle of the night with breathing difficulties. We immediately rang 999. She was taken to Royal Bolton Hospital and treated for Respiratory syncytial virus (RSV.) Tests confirmed she did not have RSV but everyone played it safe. 
After 3 more days there we were discharged and went to Alder Hey to attend the Cardiac / Feeding Clinic, where surprisingly Lagan was readmitted. I was completely unprepared and had no clothes, milk etc. Mark Dalzell the Gastroenterologist decided Lagan required a PEG. She was failing to thrive. The operation was done the next day and only took 20 minutes. Amazingly after that Lagan began to pile on the weight. I hated using it but knew it was the best thing for her. A couple of days later Lagan was discharged. We had to return to clinic in 2 weeks.
Two weeks passed and Lagan's reflux began to get worse and worse. At home I panicked, I had no one who could advise me. Was this normal? Were we feeding her too much? Etc? No one could help me. We return to clinic and the Gastro team readmitted us to observe the reflux. They changed her medications and eventually after a fight they discharged her. Alder Hey only wanted the very best for Lagan. 
Life got more and more difficult. The reflux took over our feeding regime. I hated being out of the house too long and therefore found myself house bound. Lagan was fed every 3 hours and each feed would take an hour and then I would have to sit quietly with her for an hour leaving one hour free to prepare for the next feed. Was this my life now? Everything had been turned upside down!
Easter approached, and on the Friday Lagan just didn't seem herself. She had not long since had her 1st injection and I just thought she was under the weather from this. On the Saturday she was very clingy and cried quite a lot. I just couldn't work out what was wrong and put her on long feeds and gave her lots of cuddles. Easter Sunday arrived and so did all the family.
On Easter Monday we had another visit from friends and again Lagan was still a little off! She slept quite well and took her milk via the PEG only. At midnight it was time for her final feed. We were all shattered. I lay in bed with her on my chest and she took her milk without a problem and slept through it all (Something I wonder about now - Had this been a serious sign I missed?). I placed her in bed and she seemed so content. 
Exactly 1 hour from the finish of the feed at 2.30am Lagan woke up with the most terrifying scream. She was inconsolable. We thought she had nappy rash? No, Colic? No. And quite quickly she started showing signs of respiratory distress. I took Lagan downstairs and rang 999. They arrived in 8 minutes and rushed us towards the Royal Bolton Hospital. We arrived at the hospital at about 3.10am. Unfortunately, whilst on the ambulance Lagan crashed and the paramedic commenced CPR. Something I had always dreaded.
On arrival at the hospital everything became a blur. Barry was still at home and I was at the hospital. I knew she was dying and felt hopeless....
After 30 long minutes the medical team worked on Lagan solidly desperately hoping something would work and sadly at 3.41am on the 26th April 2011 Lagan was pronounced dead. She had gained her wings in the most distressing way.
When I look back now I always ask, why didn't I take her earlier? Why didn't I have help at home? Was she presenting signs of heart failure? Was I labelled as a paranoid parent and due to all the funny looks and lack of support became frightened of taking her to our local hospital? All questions that just will never be answered.

No parent deserves to go through that and therefore Lagan's Foundation was born.
I vow to bring to parents the information they ask for, the support at home they need and the sensitivity and passion every heart parent has.
Our story is tough but true. I hope through Lagan's Foundation, Lagan will be remembered and many more people will be helped.

Carren Bell
Angel Lagan's Mummy
The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx