Country: England, United Kingdom
Jessica’s mother Emily wanted to write her story to promote the use of Multi-Function Patient Monitors and to help with our fundraising for one monitor
At my 20 week scan they discovered that my baby had a small Exomphalos (some bowel outside of the body). I had regular scans and an amnio & none of these showed that there was anything else wrong. So even though I’d had a c-section with my son (Ben) I was told they were happy for me to have a natural birth in Taunton & the baby would have surgery not long after being born. A few weeks earlier than expected on 20th July 2010 my waters broke at 07:00 and my baby was born at 13:20, it was a beautiful girl, I was allowed to have a cuddle then they put a plastic bag around her middle & took her down to NICU.
She was transferred to St Michaels NICU (Neo-natal Intensive Care Unit) in Bristol that evening.
When we got there they explained to us that because of the Exomphalos they had scanned the baby’s heart & renal function and had found a hole in her heart, though not to worry as a hole in the heart is quite common. I was given a room along the corridor from NICU which I was grateful for but missed being at home with Ben & my husband so was quite emotional. We decided to name her Jessica and when she was two days old she had an operation to put the bowel back inside her body. This went very well and Jessica was back in Taunton NICU at 9 days old to establish breastfeeding. We were told the symptoms of heart failure (a very scary word) and a follow up appointment was made to see a cardiologist in Taunton in about 6 weeks time.
Jessica was allowed home at 11 days old as she had taken to breastfeeding. She was quite a sleepy baby but not to unusual for a small baby and when she had a check up with a paediatrician in mid August they could not see any signs of heart failure. I remember thinking that things were now going to get better and we could enjoy being at home as a family. Then 5 days later Jessica was more sleepy than usual, had been sick a few times, and had a sweaty episode. I just knew that she wasn’t right so we took her to A&E, where she was seen very quickly. She went blue and her temperature had started to plummet, suddenly, then lots of doctors appeared. I felt helpless and very scared. They could not work out what was wrong with her, so they decided that she needed to be transferred to Bristol Royal Children’s Hospital PICU. The transfer team from Bristol came to get her, she was ventilated & sedated; at this point I felt exhausted and numb. My husband was away with work so my parents looked after Ben and I was allowed to travel up in an ambulance car. When I got to see Jessica she was hooked up to lots of drugs as well as being ventilated. It was horrible to see her like that but the nurses were great and explained everything to me. My husband managed to get to the hospital a few hours later. Jessica was very poorly and they were going to do lots of tests to work out what was wrong as they didn’t think it could be just down to the hole in the heart. None of the tests came back with anything, though a detailed ECHO of her heart actually showed that she has multiple holes (Ventricular Septal Defects [VSDs]) and poor heart function on the left side.
We were fortunate to get a room at the Ronald McDonald House so my husband and Ben could also stay up in Bristol. All of the grandparents were fantastic and helped look after Ben as well. Within a few days she was off the ventilator, up on to the cardiac ward (ward 32) and breastfeeding again. I remember thinking surely they must let us go home soon as she was doing so well.
They then decided Jessica needed an operation to put a PA band on to stop her flooding her lungs with blood, as they want her to grow bigger before operating on the holes due to one of the bigger muscular ones being in an awkward place. Jessica had this operation on Mon 6th Sept 2010. Leaving her at the theatre doors was horrible, we went into town to keep busy. I didn’t get to speak to the surgeon but was told the op went ok and that he’d talk to me tomorrow. The following day an ECHO showed that the band was too tight so they had to open her back up again on PICU to loosen it then and there. The wait in the parents room was horrible. Jessica then did really well and was off the ventilator and back up on ward 32 by the Friday. At the time, I was thinking hopefully we can go home soon and be a family again as I missed my little boy terribly (at this point he was mainly with my husband or grandparents as we wanted him to still be able to go to nursery/pre-school). But late that Sunday evening Jessica was quite restless & had an episode where she went grey and sweaty, though she seemed OK afterwards. A few hours later she was struggling to breath and her blood gases were very poor, thus, she was taken back down to PICU. The doctors told me it was touch and go and Jessica was put back on the ventilator and numerous drugs.
As Jessica had been doing so well my Husband had not been in Bristol due to work so I had to contact him to let him know. I remember sitting in the quiet room while they were sorting Jessica out thinking “please don’t die”. Looking back this was one of the lowest points I had because I knew that she was really really poorly. I was allowed to go and be with her – even though ward rounds were happening (normally the ward is closed at this point). Within a few hours she was much more stable. Once again they couldn’t understand why she had gone into heart failure so quickly and more tests were carried out, which didn’t come back with any real explanation. They took things a bit more slowly this time and she stayed in PICU for two weeks. They decided to put a Hickman line in because she would be going back up onto ward 32 while still being on an inotropic IV drug called Milrinone and on high-flo (but in air). This involved another operation under a general anaesthetic which was risky with her poor heart function, but she came back unventilated which was good.
While on ward 32 they tried quite a few times to wean her off the drug, but each time after a few days Jessica started to show signs of getting ill again, just as they were talking about her going home! It was such an emotional rollercoaster. Although I missed my son & husband, Jessica needed me so I spent most of the day in hospital with her & was again fortunate to still have a room at Ronald McDonald where I could get some proper rest at night. In November 2010 they decided to involve Great Ormond Street (GOSH) as they couldn’t understand why she couldn’t cope with just the oral drugs. They did not come up with any answers either but suggested testing skin and muscle biopsies. Just before Christmas 2010 Jessica had another operation under general anaesthetic to take the biopsies, she was a little star and back up on ward 32 within an hour. I was so relieved that she hadn’t had to go back to PICU. The results from GOSH did not come back with anything. So they decided to keep her on IV Milrinone 24/7 (along with a few other oral drugs) until her heart function improved for an operation or to cope on oral drugs. Although I was totally gutted by this decision because it would mean Jessica would have to stay in hospital (I desperately wanted us to go home to my little boy and husband), I also knew it was the best option for Jessica. I was sad that she wouldn’t be home for her first Christmas but the hospital staff were fantastic and made it as festive as they could. Ronald Mcdonald and ward 32 were like my second home and we did what we could to make Jessica’s cubicle less clinical. She enjoyed her walks up and down the corridor (I must have walked miles). I had good and bad days and, although I was happy for other parents when they went home I was also annoyed that it wasn’t us, we saw so many people come and go.
As Jessica had been stable on the Milrinone for a while we asked if there was any chance of going to a hospital closer to home so I could be closer to family and friends. Taunton didn’t have anyone with enough cardiac knowledge so it was agreed she could go to Exeter, which is where both sets of grandparents live. On 1st February 2011 she moved to Royal Devon & Exeter NHS Foundation Hospital, Exeter. Although I wanted her to move I was also nervous about her going to a general children’s ward so I stayed in hospital with her 24/7 for a few days. Jessica and I got used to the new surroundings hence I was able to go home in the evening more often to spend some time with Ben which was fantastic. After a few weeks, as long as I had another person with me, I was allowed to take Jessica outside in the hospital grounds for walks. It was so good to get her outside so she could experience more than a hospital ward. The cardiologist that visits Exeter did regular ECHO’s on Jessica and at the end of April 2011 after one he said ‘that Jessica’s heart function had improved enough to try and wean the Milrinone again’, so they’d try to get her up to Bristol as quickly as they were able to do so. But as usual with Jessica she was the one to decide when this would happen as her Hickman became blocked a few weeks later, and Exeter couldn’t get it working. So off in an ambulance we went to Bristol. They got it working but since we were there they decided to wean the Milrinone and introduce a beta-blocker. I stayed with Jessica on ward 32. It was really nerve racking time once she was off the Milrinone. Finally it worked, my gorgeous girl was free of being permanently attached to an IV pump. They kept the Hickman line in just incase. This was great news but I was scared of going straight home. The doctors on ward 32 reassured me that her heart function was so much better, however, I was asked to go to Exeter hospital for a few days first.
The day we were supposed to move from Exeter to Taunton Jessica started being sick and my first thought was her heart and we didn’t go. It was just a bug but then when they flushed her Hickman line it was leaking. We had another trip in an ambulance up to Bristol for the line to be removed, although it was a simple procedure I still hated leaving her at theatre. A few days later we finally made it to Taunton hospital where we stayed for about a week so they could get to know Jessica, and I could get into a routine with her NG feeds & meds. Finally after nearly 10 months in hospital we got to take Jessica home.
Ben had to stay with his grandparents until the end of the week as he’d been in contact with chicken pox which could have been dangerous for Jessica. I was quite upset by this as I was so desperate for us all to be together. When he came home at the end of that week it was just the best feeling that we were all together in our own home.
Though she is still mainly NG fed Jessica has come on so well since being at home. Jessica has been told to behave so that we can have this Christmas and New Year at home together.
Jessica is now due to have a Cardiac Catheter early in 2012. From that they will determine what type of operation will be best for her and when roughly she will need it. I just hope that any future hospital stays are a lot shorter!
Wrote by Emily Collacott
Emily Collacott has given CHD-UK permission to use the above photos