What does Indi have?

     Indi has one of the most unique, rare and complex cardic defects out there! Indi is a true miracle baby! She was even conceived on the island her daddy survived the tsunsmi on back on boxing day 2004....She truly is magical! Infact the only reason we found out indi has a complex heart condition is because of sarah having intense intuitive feelings that something was wrong and so listened to this and we booked one last really late scan.

 

​

The first surgery was only started in 1979. Individuals who have HLHS and were born in the 80's are the 'ginnie pigs' for trials and new cures, medical intervention and also teaching the consultants and surgeons along the way! Currently we are caring for Indi during her home monitoring program. She is fed via ng tube, has digoxin heal pricks weekly to regulate her heart and to stop heart failure medication, medical protein rich milk as HLHS babies find it hard gaining weight and she needs to be 5-6kg to have her next surgery, oxygen stats are also done by us daily alongside juggling our wild, protective and adventurous 3 year old bodhi alongside preparing for indis 2nd operation.​

 

Indi has a double outlet right ventricle (DORV), Atrial septal defect (ASD), Ventricular Septal Defect (VSD), Mitrial artrisia (MA) this is her mitrial valve that doesn't work or open which is why her left ventricle is hypoplastic meaning it is small and not in use. indi also has a heart murmur due to the wooshing of blood from the vsd but this will get better after her glenn (2nd op). It is quite common when having HLHS or HRHS. indi may be refered to as having hlhs but she doesnt have the syndrome as she has a very good sized aorta and it is not starved of oxygen as it goes into the right ventricle already (dorv). Indi will undergo a series of 3 open heart surgeries so that her blood flow is redirected. Leaving her with a single ventricle. This is very rare and is because one lower chamber of the heart didnt grow and got blocked along the way. The chamber was smaller, underdeveloped, and missing a valve. Therefore Indi is missing the left pump which shoots the blood which has been oxygenated by the lungs to the rest of the body.​

 

Hypoplastic Left Heart Syndrome (HLHS) - An underdeveloped left side of the heart. The aorta and left ventricle are too small and the mitrial valve did not properly mature and close, blood returning from the lungs must flow through an opening in the wall between the atria (atrial septal defect) -as indi's was quite small she had an atrial septectomy to widen the hole then a PA band around her artery to stop too much blood flow to the lungs so its manageable until her 2nd surgery where the surgeons focus on the plumbing/circulation and the removal of the pa band. The pa band is needed because the right ventricle pumps the blood into the pulmonary artery so it needs to be controlled so that the lungs don't fill themselves with blood.

​

.  Indis heart defect is usually fatal within the first days or month of life unless it's treated, the surgery is very high risk and the following 6 months up until the 2nd surgery is very very fragile. Although this defect isn't correctable, some babies can be treated (not fixed) with a series of operations. We are so so faithful that in a few years a cure WILL be found through stem cell and tissue research.

 

Surgery should be performed in three main steps, and carried out in several stages. The first stage (Norwood procedure) allows the right ventricle to pump blood to both the lungs and the body without the need for the ductus to be kept open. Blood is directed to the lungs through a Sano shunt as usually the artery is small however in indis unique case her body seemed to be clever and realized it is going into the opposite ventricle so created itself at a bigger size! Therefore indi didn't need the full Norwood procedure she had a slightly different one called a hybrid norwood where the surgeons put a PA band on her artery so that the lungs dont get flooded with blood and also widened her hole so that oxygenated and deoxygenated blood will flow easily inside one pumping chamber. This was performed when indi was just 9 days old. That surgery saved her life and she would not be here today if she didn't have the procedure. The goal is to allow the right ventricle to pump only oxygenated blood to the body and to prevent or reduce cyanosis (lower than normal blood oxygen levels). However, the first operation Indi had is palliative meaning her heart will outgrow what is keeping her alive today and she will need another life saving operation.​ This is why she is monitored super closely until her 2nd surgery.

 

The second stage (bidirectional Glenn or hemi-Fontan) is usually performed between 4 and 7 months and the third stage (lateral tunnel Fontan or extracardiac Fontan) is usually performed between 4 and 7 years old. These operations create a connection between the veins returning low-oxygen blood to the heart and the pulmonary artery. Indi has had her CT scan and is now awaiting to hear back from the medical board. I will update this website as soon as I know more on the dates of her proposed surgery. 

​

Despite all of Indi's battles, pain and trauma, she is a happy, joyous & such a beautiful baby with such a graceful, healing, calm and awe-inspiring energy about her (if you have met her you will know what I am talking about!) She also has amazing colour (sometimes HLHS babies go blue due to lower oxygen levels) but indi has great oxygen stats that sit around 88-90% due to her arteries both being great sizes! Her body seemed to have picked up that something wasnt right with her heart so her body consciously decided to plant both arteries into the right ventricle and made sure they are both good sizes for good oxygen flow!- this is actually why her condition is so so rare and unique as usually one of the arteries is thinner than the other from where the blockage created a lack of blood flow in the left ventricle - indis body magically sent signals to her to let her know to make sure the arteries are both planted in the right ventricle beause something is wrong with the left! This is proof she is a true miracle in human form… an Angel here on earth as some people say! 

​

​

​

​

​

​

​

​

​

​

​

​

​

 

 

Our  thoughts as a family...

​

 We continue to fight and flow in the motion of faith! We surround indi with beautifully high vibrations every day and holistically treat her at home with all our knowledge on natural health care - the same as we do with bringing Bodhi up! We transmute the energy of sympathy, worry and scarcity with empathetic connections, trust, faith and prayer. Most of all indi has us as her advocates! We love her and she has given us this beautiful transformation and balance as a family along with this immense sense of gratitude for life itself. Indi makes us feel empowered and has shown us the reasons why love over fear wins each and every time. She teaches us to stay in the present moment, healing as we go and showing up with vulnerability and openess on our life path! we will be on this beautifully raw and unique journey with her every step of the way. Even though she is classed as disabled as there is no cure (yet!) and will live with one heart ventricle we will only wish to see her have a life of living to the absolute fullest, full of adventure and travel and will never dis-able her from living LIFE! We will encourage each and every dream she has - Indi you absolute warrior. Our wise teacher showing us what strength is and the true meaning of the magic of life every single day!

​

​

​

​

​

​

​

​

​

​

​

​

​