WHOLEHEARTEDLY LIVING WITH A UNIQUE HEART!
KNOWLEDGE IS POWER - SHINING THE LIGHT ON CHD'S
'The more we talk about a Single Ventricle anatomy heart the closer we will get to finding a cure'
HLHS- Hypoplastic Left Heart Syndrome
our journey in indi's first year of life
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We are spreading awareness and a general understanding to congenital heart defects (this stands for CHD and means a heart defect which the baby already had as a fetus & they were born with a heart defect). 1 out of 100 babies are born with a CHD! 75% of babies with CHD's wont make it past the age of 1 if the country they are born in don't have all 3 open heart surgery options or with continued monitoring. Though there are treatments for most congenital Heart Defects, there is NO cure (yet!)
A child born with a CHD like indi requires continued monitoring and care throughout their life. Indi has double outlet right ventricle which means her aorta planted itself beautifully into her right ventricle rather than her left. she also has metrial artresia meaning her metrial valve on her left vetricle was blocked for a reason that is unexplainable. This didnt allow the oxygen in to her left ventricle which also meant that it was tiny and could not be used this is a variant of HLHS. Hypo-plastic left heart syndrome means that indi's 4th chamber in her heart didn't grow which means she will live with only 2 chambers and 1 single ventricle - HLHS is one of if not thee most complex/severe heart defect known in humans. However, with amazing medical surgeries, hospital treatments and scientific research in place there are now more adults than children with HLHS and even better they are working on a cure at this very moment in time!
Remembering back to the fetal cardiology scan the language used regarding Indi's heart and the length of rigorous investigation with the probe on my tummy i knew we were in the right place. The fetal cardiologist said its serious - your'e family is in good hand's. They gave me 3 options and were getting through them slowly i just remember interrupting them with a reactive explosion of emotion and just shouting 'can you save our baby' to what i remember as the best answer in the entire universe - yes, yes we can. To that I answered 'thank you so much' with a huge sense of relief and tears rolling down my cheeks 'that is the option we will be going forwards with'. The team then said 'we will do everything we can - lets get a plan ready and in place' 'we only have 1 week until you are full term. You have done the best thing as parents!
DORV a varient of Hypoplastic Left Heart Syndrome is a very rare condition. Lets think of a scale of 1-10 a hole in the heart is a severity of 1 where as what Indi has is the most complex condition being a 10. HLHS occurs in approximately 1 in 44,000 babies and accounts for only 1% of all congenital heart disorders (However the anatomy of Indi's case is so unique).
Doctors have developed a way of bypassing the malformations within the heart so that blood can circulate around the body but they are unable to make a ventricle, so even following surgery the heart will have one working pump rather than the two seen in a normal heart. There are many heart conditions that do not have a specific genetic cause. Many of the single ventricle heart conditions fall into this group. We have also been wrapped in faith by speaking to other single ventricle parents and even become friends with beautiful individuals living with what Indi has! There are also many many risks in HLHS women having babies - now with surrogacy and adoption being more widely available and medical advances allowing women who are single ventricle to carry their own pregnancies there are now more possibilities than obstacles! let's all keep believing in limitless miracles!!!
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indi's unique Norwood, Glenn and Fontan
Indi has had her first open heart surgery a hybrid norwood which makes her hole lengthen and surgeons put a band around her pulmonary artery so not to too much blood floods into her lungs. This surgery saved Indi's life, however her heart will outgrow this surgery and it is keeping her alive between her first and second surgery.
Indi is going to have her Glenn in a few months. The aim of surgical treatment is to re-route the blood through the right side of the heart, bypassing the blockages on the left side. This surgery is offered in three stages over three or more years and involves extremely high-risk, open-heart surgery. Each surgery will be ward stays and CICU stays so she is closely monitored through recovery.
CICU
Indi's brother bodhi visited indi in the cicu. He was so brave! we can explain to him through pictures what happened within our lives when he's a little older!
Indi was in the cardic intensive care (cicu) at just 9 days old. she had a miraculous recovery and was in intensive care for 8 days. she was on a ventilator and took two attempts to come off it and onto high levels of oxygen. She then moved to the ward to establish feeding and for me and Reece to become ng trained for feeding, medication & cpr trained. Reece and Ihave also been healing from the cicu - the beeps, noises, fight or flight, intensity leaves alot of parents with ctsd. ptsd can occur however as parents of single ventricles have to go through this 3 times they diagnose it as chronic traumatic stress disorder as you are still going though it where as ptsd is in the past and unlikely to happen again.
Feeding via NG tube
Indi is NG fed as the hospital needs to know how much fluid she is having (she has bottle trauma and a lip tie so is currently seeing an osteopath for tension release and oral motor skills + has a speech and language therapist) This is why the ng tube is needed at this stage. On top of regular milk and breast milk she also has high protein milk so that her weight is at the perfect kilos for surgeons to perform the 2nd surgery (glenn) before her ASD (the hole) closes. usually its good if a hole closes however in indis case it has to stay open so that it let's more blood with oxygen get back to the right ventricle so it can be pumped out to the body.
We try to feed her in the forest as much as possible so that she is in a calm and peaceful environment. Much of Indianna's healing journey and trauma recovery has been through forest bathing and being carried as much as possible rather than using a buggy so she has close contact to us. We are currently 90% through our NG training so we can put the tube back down ourselves rather than calling a nurse.