Saving ZARA

September 13, 2006

We just returned from 2 days in Melbourne.  Absolutely exhausted both emotionally and physically.  I had to take all the kids with me to Melbourne and didn't want to leave any of them behind even for the two days that Zara and I would be away.  We had met with a Heart Transplant Surgeon at the Royal Melbourne Children's Hospital for a briefing on what we could expect with the whole transplant procedure, and get all the facts on heart transplants in Australia as a fall back in case for whatever reason Zara cannot or does not get a heart in the US.  We were informed of all the complications and problems that may be associated with the procedure, most of which I had already known but to hear it in detail and to hear that the risks were so high, it just seems so overwhelmingly depressing.  So hopeless.  A donor heart would only last 10-15 years maximum even when the transplant is a complete success.  The risk of rejection was a big concern also.  Even if all goes well, the likelihood of the development of cancer or renal failure due to the immuno-supression drugs post-transplant would be great.  We would be trading in her heart problems with cancer or kidney failure.  The likelihood of being able to receive a second heart transplant when her first deteriorated was slim as those who have not had their first would be given priority, and by this time she would be competing against all the adults waiting for a heart.  They mentioned that a teenager with no dependents and already having had one transplant would likely be given less priority than a middle aged man with dependent children.  I guess I could understand the logic of this, although I don't want to think about it.  I have had Zara's twin brother Tyger and older brother Java screened for Cardiomyopathy when Zara was diagnosed, and both results were negative.  However, there is about a 20-25% chance statistically of Zara's brothers developing Cardiomyopathy at some stage in their lives.  There is a chance Zannie or myself carry a gene responsible for Zara's illness and we should be tested immediately to rule out the possibility of one of us having it without any obvious symptoms.  I remember reading an internet homepage of a mum who had a baby with Cardiomyopathy in America and she did not have insurance.  She mentioned how she asked herself repeatedly, how much is a life worth?  Is it worth selling all your assets including your home, and disadvantaging your other children's lives by not being able to afford decent lifestyles and private education?  I remember thinking I would rather live in debt and poverty than in guilt and without Zara.  Talking about the costs involved not only in the procedure itself but with the hundreds of thousands of dollars for Zara's after care and medications ($33,000 per year forever), it did make me recall what that mum wrote.  Not that I would consider Zara's life not being worth millions, it all makes you think about what we are doing to the other children in the process.  So many emotions and so much to consider, I just can't wait to get to NY and see and be with Zannie.  Packing up house and dealing with the kids on a daily basis is stressful and doing it alone doesn't help.  Better get some sleep now, more next time.

July 12, 2006

This may be it.  I sit here with a heavy heart and the tears are never ending.  Zara has been hospitalised again, she caught what appeared to be like a cold again, only this time her laboured breathing became obviously intense right away.  I took her to the hospital emergency room without hesitation, forgetting my wallet at home I was so nervous.  I just didn't want it to be anything but a cold.  They tested her positive for an influenza type virus, called RSV, Respiratory System Virus, which could put a regular baby in hospital or even death, let alone a terminally ill child.  Zara's breathing has been so laboured, every time she takes a breath her whole body jerks.  She is so tired and exausted and has no strength.  She refuses to eat and drink, at most taking a sip of juice every couple of hours.  She is aware of what is going on and looks at my eyes to tell me she is miserable.  Asking for me take her out of that horrid metal hospital cot, her eyes begging me to take her home away from the miserable hospital she has come so used to know and hate.  I cannot help but think of the worst.  I am not ready for this, I need her to recover, we all need her to.  To add to my current depressive state, I have just discovered a lady by the name of Jeanine whom I have never met but been following her story on the net over the last 6 months has just passed away from the exact disease afflicting Zara - Idiopathic Dilated Cardiomyopathy.  Jeanine was a pioneer in stem cell therapy and within one year of having stem cells transplanted in her heart while she waited for a new heart, she passed away in her home in the arms of her husband, leaving behind a baby son.  He pregnancy tipped her heart over the edge.  It is with every cold, every virus, every illness you experience, the heart only gets worse.  There is no such thing as the heart getting better once the damage is done, it can only get worse.  Knowing this, it is hard for me to sit here and think about Zara and what will this RSV will be doing to her heart as I type away.  I hate the fact that there is nothing I can do.  When your own child gets sick, you take them to the doctor, give them medications and most mothers would assume they get better, why wouldn't you?  But when you are faced with the fact that your own child could die at any moment without notice, and so suddenly without any warning, the cloud over your head or the weight on your shoulders seem to linger forever and ever and I can't seem to keep myself afloat.  I don't wish this on any parent, to face the possibility you may lose your own child, and knowing that death sentence could be shortened, not knowing when that bomb is going to go off, its the worst feeling in the world.

November 23, 2005

I have not been in touch with family and friends for so long and they've probably all been worried sick not knowing Zara's progress, it has not been been my intentions to worry everyone, only that it causes great heartache to discuss her illness with loved ones as it reminds us of the reality of the situation.  We do have some good news and some bad. The good news is that we are now out of hospital and back at home (Sydney) yay!, and secondly Zara 'appears' happier, and we have managed to get the US Embassy to at least consider the option of providing me with an expedited visa to the US (repeat - CONSIDER).  The bad news is that Zara's condition has not improved at all since she first was rushed to hospital even on the numerous doses of medications she is on, and that we are still here in Sydney awaiting my own visa so I can travel with the rest of family (all dual citizens now except me) to NY for Zara to get on the heart transplant list.  Lastly, last week I had out of lack of attention to detail (likely out of exhaustion) unintentionally overdosed Zara with one of her meds, which in the end did not harm her with long-term effects, but ended up with us rushing her to hospital and I could have killed her. The guilt was overwhelming.  Zara's condition has remained critical and doctors say she is in end-stage heart failure. Her heart ejection fraction rate (pumping capacity) is at 10%. Doctors say it is quite amazing she is literally being kept alive by a heart which only pumps at 10%, considering anything less than 40% is severe.  Zannie and I have come to terms with and accepted our fate somewhat.  We will not sit back and watch Zara die without fighting to do everything we can to keep her alive as long as possible.  We try to maintain a normal routine lifestyle as much as possible in the meantime.  Doctors predict and statistics show a baby with such sever heart failure who are diagnosed with Dilated Cardiomyopathy within baby's first few months of life will unlikely live to age one.  We are blessed in other ways for if Zannie was not American, we would not have this opportunity to go to NY that could save Zara's life.  Other families in Australia who we've talked to don't have this opportunity and their future is even more bleak.  We happened to be enrolled in an international health insurance company that we first had through Zannie's employer and it covers a good portion of the cost of her treatment in US.  Thank god we stayed enrolled in this international insurance provider.  Although the premiums are extraordinary, they are well and truly now worth every penny. 

October 4, 2005

I sent out a thank you email to friends today for all their love, support and all the calls, mail, balloons etc. we've received. I am making a scrapbook for Zara so she can reflect on this time when she grows up, and keeps me busy and my mind occupied while we are here in hospital.  Zara is currently in a somewhat stable condition. She is still very unwell, but stable. Due to her heart condition, her lungs are filling up with fluid and her body refuses to drink milk, and we are forced to tube feed her. We cannot feed her large amounts that a normal baby her age would have as this causes undue stress on her heart, and she is being fed a minimum to keep her going. Her weight has dropped dramatically, and she is weak and frail. However, she still manages to smile from time to time.  Doctors believe she will require a heart transplant, and are not too sure how soon. They believe we have about two months before she becomes too sick to be evacuated. As heart transplants are only done in Melbourne in Australia, and the percentage of receiving a heart is statistically very slim here, we have decided to move her to New York.  In the US, her chances are higher at 70-80% since she qualifies for US citizenship. It is now a race against time to get her there. We have begun applying for all the kids passports, but we have come to a road block for a visa for me.  INS (Immigration and Naturalisation Service in USA) won't grant me a special visa for this, and have told me I must wait the normal 6-12 months for a spouse visa.  They won't even give me a tourist visa. In the worst case scenario, Zannie will go alone with Zara and I will later follow with Java and Tyger. Bloody Immigration!!!!!!!!!  We are running around like headless chickens trying to sort all of this out. Anyone who has contacts in the New York area for possible housing, employment for Zannie, info on schools, we would much appreciate it.  The hospital Zara will be moving to will be the Columbia Presbytarian Hospital in Manhattan.  We just keep asking everyone to keep praying...

September 24, 2005

Zara is still in hospital and will be for sometime. Clinically she has not responded positively nor negatively to the usual cocktail of drugs that is given to anyone with this disease. The doctors are considering giving her a drug which is relatively new and experimental. They must request approval from Canberra (our nations capital) in order to give her this drug due its risk. The drug generally accelerates the deterioration of the disease temporarily, and after several weeks, in some cases has positively improved the condition. In some cases it has resulted in death of the patients on the drug. We have no other alternative but to agree to trying it.  If the drug fails to result in improving her condition, she will go on the heart transplant donor list (our final option). The doctors have told us this is not an option they want to have to do as the possibility of a healthy baby heart becoming available any time soon is very poor in this country.We may consider moving us all to the USA if necessary (just a thought) for a better chance to receive a heart...... I am staying/living with Tyger and Zara in the hospital and Java will be flying up to stay with his Aunt in QLD until Zara is better.  Between Zannie's night shift and me being at the hospital 24/7 poor Java is being so neglected.  I hope he gets super spoiled during this time he is away.  He is being such a big brave boy flying solo for the very first time at the age of 4!  What a champ!