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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Imogen's Story


    Our third pregnancy was very eventful from the start. At 10 weeks I was rushed into hospital for emergency surgery for a suspected Ectopic pregnancy. 4 hours later I was told that the baby was in the right place but that there was significant damage to my fallopian tubes and that any further pregnancies would not be possible. The doctor also warned me that my hormone levels were much lower than they should be so to expect this pregnancy to end in miscarriage. Weekly scans followed and the pregnancy progressed, much to our delight.

    At 22+ weeks on Sept 9th 2009 (9/9/9) we went for another scan...this time the anomaly scan. Waiting in the waiting room with a full bladder, all I had on my mind was whether I was expecting a boy or a girl and how desperate I was for the loo!! I had no reason to think there was going to be any problems, we had 2 healthy boys at home and had been scanned several times in this pregnancy already and nothing had shown up. A few minutes into the scan the sonographer quietly put down the scanning probe and placed his hand on my arm and said words I will never forget....’I’m very sorry but there is something wrong with your baby’s heart.’ My world fell apart there and then.

    Fast forward 48 hours and we are sat in St Michael’s Hospital, Bristol, waiting for a Fetal Cardiologist to give us his opinion on what exactly is wrong. After what felt like an age, he turns on the lights and explains to us our baby’s diagnosis....Hypoplastic Left Heart Syndrome and Unbalanced AVSD. He then sits down and draws diagrams of what a heart should be like and what our baby’s is....all I can do is sob silently as he explains the 3 options available to us.  Termination, Comfort Care or Surgery.  None of them are decisions we want to make, although we instantly know we have to give our baby a chance to fight and decide there and then to go ahead with the surgical option.  My Husband asks questions like, causes, survival rates and long term prognosis and I sit in the chair, feeling numb. The baby is now wriggling around after being prodded during the scan and all I can think is that this is some awful dream, that they must be wrong, how can such an active baby be so ill?

    We go into another room to be scanned again, this time to check that the rest of the baby’s organs are developing correctly. It is here that we find out that our ‘bump’ is a little girl. She appears to be well and they cannot find any other abnormalities except for in her umbilical cord. She has a Single Umbilical Artery. This should not cause too many problems although may make her more likely to be small and possibly premature, which may make her unviable for surgery, in which case we would have to let our baby go. I decide not to think about this and that I would do everything I could to get my baby girl as big as I could and stay pregnant as long as possible! I was afraid though, very afraid. I had not got past 37 weeks with my sons and although they were good weights and absolutely fine I knew that this was a completely different kettle of fish. The doctors advised us to have fortnightly growth scans at our local hospital, to keep an eye on our little one and check her fluid levels and growth were ok.
    Imogen 

    On Tuesday January 5th 2010 at 1:53am, whilst the rest of England was blanketed in heavy  snow, Imogen Hope Penney made her entrance into the world, weighing 6lbs 6ozs and measuring 42cms in length. She was alert but was blue and completely silent. I was prepared for the amount of people and equipment in the room but not the silence. It was deafening. Why wasn’t she crying? My sons came into the world declaring their arrivals! What did her silence mean? Was she too weak for the battle she faced? I was reassured that she was ok and the team of doctors quickly set to work on setting her up for immediate transfer to PICU at Bristol Royal Hospital for Children and after a brief glimpse at my beautiful daughter, she was taken away for her life-saving treatment to begin.

     

    I was allowed to go to the hospital and see her 9 hours later and as I walked onto the unit with my Husband (who had briefed me on what to expect), I couldn’t believe how busy yet calm it was. Bed after bed of sick children with parents, doctors and nurses all working around them but yet no one was flustered or shouting....it was peaceful almost. As I approached Imogen’s bed, I tried to blank out all the machines and bleeps and focus on her, the most beautiful little girl in the world. She had a sprinkling of bright red hair and looked just perfect. The nurse explained how Imogen was doing and what each machine did and asked us if we had any questions, or if I needed anything. All the staff were so friendly and approachable, I instantly knew my baby was in very good hands.

    Imogen in Hospital

    Days passed and Imogen continued to do well (she was placed on CPAP on January 8th due to some breathing issues but was otherwise stable), surgery was set for January 11th, and as long as Imogen could hold her own, the surgeons were confident that, despite things being a bit more complicated and risky than first thought (Imogen  had HLHS Variant, Coarctation of the Aorta and some other ‘quirks’),   they would be able to perform Stage 1 Norwood surgery on her and do a heart valve and tissue transplant at the same time.
     
    The day of surgery arrived and watching the surgeons take our little girl away, not knowing if we would see her alive again, I can honestly say, was the hardest thing we have ever had to do. The surgeons told us that they expected Imogen to be back on the unit by 2pm....she had gone to theatre at 8:10am. We were advised by the nurses to go and do something during that time, to try and distract us from clock watching. Bizarrely we decided to go and do our laundry!! Sitting in the launderette (we were still waiting for a room at Ronald McDonald House) watching our clothes go around and around was mind numbing and although I didn’t stop thinking about Imogen, or checking my phone in case the hospital had called, it passed some time.  2pm arrived and we decided to go back to the unit and wait for news. Finally, at 4:40pm we were told that they were just finishing off and that we would be able to see our little girl within the hour. We were so relieved!! Then the Chaplain, who had performed Imogen’s blessing the day before, came and sat with us and told us that she had seen Imogen being brought back to PICU and that she was looking good and I cried with  relief, exhaustion and pride.

    No one can prepare you for walking into PICU to see your baby after open heart surgery. Imogen was surrounded by even more machines, drips, monitors and doctors than ever before and there was a sign above her bed that, to this day, still gives me a shudder, ‘CHEST OPEN’. Andrew Parry, Imogen’s surgeon was there and said that she had done ‘ok’ but was still very critical and that we should be prepared for a lot of tweaking and not much progress over the next 24 hours as the main aim was to stabilize her enough to try and close her chest the next day. She needed numerous blood transfusions and dialysis and as the nurses were a hive of activity around us, I just sat and stared at my daughter. She was swollen, paralyzed, on a breathing machine and heavily sedated, but SHE WAS HERE! She had come through and now we just had to concentrate on getting her better.
     
    Over the next 7 days, Imogen amazed everyone, she recovered so well and on Monday January 18th was taken to the Ward. This meant that for the first time I would be able to sleep next to her, and I couldn’t wait. I was starting to feel like things were finally becoming normal. We didn’t need 3 people to lift her out of her cot for a cuddle anymore and I could change her nappy without worrying about pulling a drip out.  We were told that the main aims for Imogen before we could take her home would be to get her used to her medication, feeding orally and gaining weight. This process took 7 days!! I cannot begin to tell you how we felt on Monday January 25th as we buckled Imogen into her car seat and took her home for the very first time. It was a day we had feared would never come. Walking through our front door to 2 very excited little boys and introducing Imogen was the best feeling in the world.

    Being at home was never dull, if we weren’t juggling a baby, a 2 year old, a 3 year old and sleepless nights, we were fitting our days around medications, cardiology appointments, RSV vaccinations, nurse home visits and health visitors, but it was what having Imogen home meant, and was worth every second.

    We were warned about the dangers of exposing Imogen to any bugs or infections and as a result were very careful to restrict the amount of visitors or visiting we did. Unfortunately that did not mean Imogen stayed well all of the time. There were a number of visits to hospital for low saturations and blue spells and in March, just a few days after her Christening on Mothering Sunday, Imogen was taken back into our local hospital with a suspected infection. On arrival, we were told that Imogen’s sats were low and breathing was hard and that she needed to be screened for infection and put on oxygen to help her. This was nothing unusual for Imogen and after a day or two we were discharged home. However, Imogen was not improving and was losing weight, so I called one of the Cardiac Liaison Sisters at Bristol. She spoke with one of the consultants and I was advised to take her up to Bristol for review that day. So, off on the train to Bristol Imogen and I went with nothing more than the pushchair, a changing bag and my mobile phone.

    On examination at Bristol it was quite clear that Imogen wasn’t quite right so I was told to get an overnight bag sent up and we were settled into one of the rooms. I phoned home and told Chris what to pack and not to worry that it was probably just an infection and that we would probably be home the next day after an ECHO and a chat with Imogen’s consultant. Imogen, however, had other ideas and during the night she spent most of the time with saturations in the 40’s and 50’s. The on-call doctor was called and after an ECHO at 2am it was discovered that Imogen’s heart wasn’t doing quite what it should be. The doctor couldn’t get a clear view of her shunt at the time and due to Imogen being extremely distressed the decision was made to stabilize her with oxygen overnight and try again in the morning. I was worried but not overly so, I knew she was with the experts and they seemed calm. First thing the next morning, Dr Hayes came and performed another ECHO. This time the shunt could be seen and it looked like it was narrowing. I was told that Imogen was actually sicker than we had expected and that she wouldn’t be going home until they had performed a cardiac catheter to see how narrow the shunt had become. I was terrified that this was going to be what we had been warned about and that we were going to lose our darling girl. She was 3 and a half months old.

    Imogen

    On the day of the cardiac catheter, everyone was feeling upbeat about things....Imogen had been stable most of the time and was on 2 hourly feeds via an NG to encourage some weight gain. She was first on the list and just after 9am I walked her down and held her while she was sent to sleep. The doctor told me it wasn’t likely to take much more than an hour and that if I went to the parent’s room, by the time I’d had a cup of tea and some breakfast, it was very probable that she would be ready to be collected. This was such a reassurance, I called my Husband and arranged that he and the boys should come and visit about lunchtime, as by then Imogen should have recovered from the general and we would have some information back. This would be the first time they would have seen Imogen since our admission and I couldn’t wait!

     

    2 hours after Imogen went down for a catheter, a nurse came to get me from the parents room and told me Imogen’s consultant (and the man performing the catheter), Dr Martin, wanted to speak with me. My stomach turned and my heart sank. They hadn’t called to say she was ready to come back yet so there must be bad news. As I went back to Imogen’s room, I met Dr Martin who was still in scrubs and gown who told me that Imogen had had a re-coarctation of the Aorta and the reason for this meeting was to gain further consent for a balloon to be used to stretch open the narrowing. I hated that there was another problem for Imogen to contend with but felt overjoyed that that was ‘all’ he wanted!! Shortly before 1pm, the call finally came to go and collect a very grumpy and hungry Imogen. Her Daddy and Brothers were eagerly waiting for her on the ward by this point so I quickly went to get her and returned her back to her family. Unfortunately, Imogen wasn’t too bright after the catheter and more than once her very pale and sweaty body dropped saturations down to 30%. The doctors were called up from PICU to assess her and decided that she needed to be placed on high oxygen again and ordered another ECHO. Both Chris and I were very worried, and I was so pleased to have someone else with me this time.

    The ECHO showed that the shunt had narrowed further since the catheter, and following a brief discussion between surgeons and consultants, Imogen was instantly placed on Heparin until a theatre slot was available for them to perform the stage 2 (Glenn) procedure. This was completely unexpected for us as we were originally told that the 2nd stage surgery was typically done between the ages of 6-10 months and Imogen was 3 and a half months old.

    We arranged for my sister to take care of the boys again for us whilst Imogen had and recovered from surgery and both waited for her day in theatre to arrive. It was so hard to wait, watching her struggle and get weaker. In fact, this time was much worse than the first. When she had the first operation, she was very stable, and everything was controlled and planned. This time everything was unknown. Would she get her surgery in time? Would she be too young to cope?  So many questions and, despite the tremendous support from the staff, not much reassurance.  The nurses who knew Imogen well by this point knew she was sick and in desperate need of this operation.

    Finally, the decision was made to operate on Imogen on Monday April 26th 2010. She wasn’t going to be operated on that afternoon as the surgeons had been in the theatre all of that morning but Andrew Parry had a discussion with his team and it was decided that they were going to go ahead, so at 2:30pm, 45 minutes after a feed and with 10 minutes notice, we were handing our baby over to a surgeon for the 3rd time in as many months. Again, unsure of whether we would see our precious girl again.

    We went back to my Husband’s room in Ronald McDonald House and I took a shower and tried to rest while we were waiting for news from PICU. In the end, we decided we couldn’t bear the waiting anymore and went to the waiting room of the unit. The nurse came out to us at 6:45 and said we could go in and see Imogen shortly. Our amazing Braveheart had done it again!! Once again, she looked very swollen and was covered in drains and wires and needed a few blood transfusions, but her chest was closed and she was doing ok. Her sats were still low, despite being on a ventilator and we prayed that this didn’t mean that the surgery hadn’t helped. It turned out that the surgery had helped and that Imogen needed frozen plasma, and extra support in her fluids and bloods to get her sats up. We were told that she was looking better but was still a bit unstable and to expect 4-5 days on PICU. This didn’t matter, Imogen had shown us how strong she was before, and we knew she could do it again.
    Imogen in Hospital




    Our amazing Imogen then stunned the staff on both PICU and Ward 32 by recovering so well that she was off of the ventilator, had her drains and wires removed and was back on the Ward not 4-5 days later but after just 24 hours! She truly was a miracle and we could not have been prouder.

    During rounds the next day, the decision was made that as Imogen was doing so well that as soon as we could get her feeding orally again we could go home, and that was expected to be within 48 hours. It felt very sudden but I had confidence that the doctors knew best and that they wouldn’t take any risks by sending her home too soon. My Husband and I decided that he would go home and get boys ready for another homecoming. Everyone was so excited.

    The day before Imogen was due to be discharged, it was discovered that she had an infection and she was moved to a HDU bed and put in isolation.  She was desaturating down to 40% again and was very blue. Her feeding was fully via an NG tube and she needed heavy support from the Vapotherm Oxygen therapy. She was struggling again and it broke my heart to see her take another step backwards. Cathy, our Cardiac Liaison Nurse, was a great support over the coming weeks, as were all the other members of staff as well as the other parents on the ward. We had been at the Hospital for 2 months and felt like we were part of the furniture! Nurses, consultants and cleaners all used to come and chat, and one of the night shift nurses, Sharon, even made cookies for me! The support was amazing, and I couldn’t have asked for better care for Imogen, but as new friends and their children came and went from the ward I was beginning to feel like we would never get home.

    During our stay it was discovered that the cause of Imogen’s low saturations was an extra artery, a persistent Left SVC. The doctors discussed the options and decided the best thing for Imogen would be to perform another catheter and try to close it off with a plug. Imogen had started to stabilize and so her consultant finally gave us the news we had been waiting for....we could go home until Imogen’s catheter 3 weeks later!! It was music to my ears!  After 9 weeks in hospital, I was finally able to take Imogen outside, free from monitors and machines! She was still being NG fed as her low saturations meant that she didn’t have the energy to feed orally but that didn’t matter. We were just pleased to have our little girl with us.

    On June 14th, Imogen had her 2nd cardiac catheter to occlude the persistent left SVC. It was a complete success and the procedure was over in 2 hours. We spent just 2 nights in hospital this time and went home with a little girl who instantly looked much pinker and brighter!!! I remember thinking, not for the first time, that the cardiac team was nothing short of amazing. They had yet again given our little girl a chance. 

    Imogen

    Imogen is now almost 2 and a half years old and although things haven’t been plain sailing since her second stage she is doing fabulously! She is no longer tube fed, has learnt to walk and talk and has even managed a family holiday to Butlins! She has had another cardiac catheter and has also been diagnosed as having complex partial seizures and is expected to need more surgery sometime this year but this won’t hold our little lady back! She is living proof that half a heart does not mean half a life!

     

    It will never be possible to thank the people at Bristol enough for all they have done for our family, but we like to show our appreciation when we can. At Christmas, we deliver presents and food parcels to the patients, parents and staff of PICU and Ward 32 and try to fundraise where we can. We will be eternally grateful to them for giving Imogen the chance of life and to charities like Amelia Matters and Little Hearts Matter for showing us that, whilst having a child with a serious heart condition is very scary, no matter what happens you are never alone in your journey. 

     

    Gemma Penney
    Mum to Jack (5), Matthew (4) and Imogen Hope (29 months)



     

     

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