UPDATE ON SUMMER- Healthy Little Hearts campaign

Surrey First Aid Training Ltd - Specialists in First Aid Courses since 2000

 

During the pregnancy scans all looked great and Summer looked healthy, but towards the end Summer's growth slowed down,an extra scanned showed nothing abnormal except a low weight. At 40 weeks and induction was done to get Summer moving, but due to Summers lack of movements this turned into an emergency c-section. Summer was born on the 3/7/18 at 10.35am she weighed just 5lb 5oz. I had to stay in with Summer an extra 10 days at Medway Hospital due to suspected sepsis ( a condition where a bacteria infection attacks the immune system) and Summer was kept on regular observations. It was recorded on day 2 that she had a murmur but this often is caused by a hole that closes a few days after birth. Toward the end of her stay her murmur was still recorded and was referred to the neonatal department for appointments as a outpatient. It was important to look out for a list of symptoms given… blue lips, fingers, sweaty during feeding, falling asleep during feeding and fast breathing.

Summer saw a Paediatrician at 4 weeks and all looked ok, but referred her to the cardiologist with Great Ormond Street.
 
For the first 8 weeks Summer gained weight well and fed normally but then suddenly started to drink only little and often, she wasn’t showing any of the symptoms given but did start to lose weight and struggle to gain. She was sent to the doctors who found nothing but her murmur. She was put on weighing every 2 weeks.
 
At 12 weeks at a weigh in it was picked up that she was breathing with a recession (babies do normally use their tummies to breath but shouldn’t continuously breathe using the muscles under their ribs) she was sent to the doctors again who found nothing. A Paediatrician appointment was arranged for a week later. He then managed to get a cancellation appointment with the cardiologist for the end of November. Unfortunately, during the wait Summer caught Bronchiolitis which for heart babies can be fatal as they have extra fluid on the lungs from the leaking heart and therefore more susceptible to chest infections. Being so small it was hard to tell how poorly Summer was, she had very quickly gone from being herself into being slightly more tired and drinking even less than her normal small amounts but something was right, she had also developed a temperature.

Summer was 4 months when she saw the Cardiologist for an Echocardiogram. The Cardiologist reported a large hole in the membrane of the heart, also called a peri membranous septal defect. Normally her heart would use the left ventricle (bottom chambers) of oxygenated blood to send around the body and the right side to send to the lungs, but in her case the hole means the blood on the left side is going into the right side which sends extra fluid to her lungs therefore meaning she works harder to make her lungs work. The calories from her food go to the extra effort her lungs need rather than weight gain. This lack of weight gain is medically classed as “failure to thrive “and her heart condition is classed as “ heart failure”. The cardiologist asked the Paediatrician to prescribe high calorie milk to help get what she needs and also diuretics to help take some fluid off the heart helping to reduce the pressure off the heart and lungs. Summer takes her medication morning and evening. The Cardiologist gave her 3 months to gain weight and strength and see if the hole may fill with surrounding tissue. She was also referred to a dietitian to see if they could improve her weight through food. She was also given a fortified for her food.

Summer was seen again by the Cardiologist at the end of January, in that last 3 months she had still struggled with weight gain and feeding. The Cardiologist had noted the hole had some tissue covering but was still very large and Summer still has an obvious chest recession. She decided the best option for summers long term health and development was to close the hole by operation. This would be in the next 8-12 weeks at Great Ormond Street. After a long nervous wait an appointment for a pre-op assessment arrived in the post for the first week of April. This day included blood tests, echocardiogram, ECG, and an x-ray, Summer enjoyed the attention. Her op was booked for the 14th of May but due to emergencies this date could sadly move. This day involves pre-op bloods, and then nil by mouth for 5 hours. Myself and Summer's daddy will be allowed in the room till she falls asleep and updated throughout the day.
 
The operation is as major as its gets for an infant, as the heart will be medically stopped, the other organs need machines to keep them going and sometimes the other organs take a while to work correctly again after. She will stay in the Critical Care Unit until her machines come off and her organs function correctly again. Once Summer is recovered she will be fixed for life and will go on to lead a healthy, full and energetic life free of medications or interventions, that is why it is important she undergoes the surgery even though she is just 10 months old.
 
Congenital heart disease is said to appear in one in 125 babies born in the UK and more than 3,000 babies are born each year with CHD. Only 50% of these are detected prenatally and sadly 1,000 newborns each year in the UK leave hospital undetected. CHD is the most common deadly congenital abnormality and responsible for 40% of all congenital abnormalities and accounts for 7.5% (1 IN 13) of infant deaths. But once detected the NHS has some of the world’s leading heart surgeons and doctors working from Great Ormond Street Hospital and other specialist Paediatric Hospitals throughout the county. We are so thankful for their care, compassion, skills and expertise to make Summer better.
 

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More information on our blog www.healthylittlehearts