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Damien's Habitat...

Aliyah














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Christelle contacted us after reading Damien's story on a site called Baby Steps.  She has written a beautiful story of the struggles their little angel Aliyah went through.  Please take the time to read this and hold Christelle, her husband George and their precious angel in your thoughts and prayers...
















Aliyah has her own website. Please visit and learn more about this beautiful angel...

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ALIYAH “ONE IN A MILLION”

           

STARTING A FAMILY

My husband, George and I were married on 13 November 1999.  We had a beautiful wedding and honeymoon and after we got back thought we would start trying to have a baby.  We really felt ready to start a family.  A year passed and I still hadn’t fallen pregnant, after going to see many doctors, one doctor finally sent me to have a laparoscopy, that’s when I discovered I had endometriosis. I had always had extremely painful periods and had always feared I couldn’t have children.  It was all a very stressful time for us.  Anyway, to cut a very long story short after 4 laparoscopies to clean out the scar tissue around my ovaries I finally fell pregnant on my fifth go of IVF.  It was around 5 years from the start of us trying to fall pregnant. 

 

As anyone could imagine we were over the moon when I found out I was pregnant.  Life was good. I had an excellent pregnancy with no morning sickness and everything was going well.  I had a great time shopping for the baby as I couldn’t even go into a baby shop before as I was very depressed that I couldn’t fall pregnant.

 

OUR BEAUTIFUL BABY

I gave birth to a beautiful baby girl, Aliyah, on 19 June 2005.  It was a very long and intense labour  (22 hours) and she was finally delivered with the help of forceps. We were so happy.

 

Aliyah was very advanced for a newborn, she could hold her head up by herself and she just looked at you as if she could understand what was going on but having said that, Aliyah would never sleep during the night, from the time she was born.  When I was in hospital the nurses would take her away so I could get some rest. Is this how motherhood was meant to be?  The nurses said that a lot of babies cry and she must have the days and nights mixed up as she would sleep during the day but not at night.  I stayed in hospital for 5 days.

 

When we took Aliyah home, it was the same. I was breastfeeding every 2 hours but during the night she wouldn’t even sleep in between feeds, she would cry all night.

 

TRUST YOUR INSTINCT

I had always noticed a little black mark under Aliyah’s big toe, I never thought anything of it but her toe began looking a bit red so we took her to the medical centre.  It was the Wednesday after we took her home from hospital. I felt a bit stupid taking her to the doctor for a red toe but I thought it better to safe than sorry.  The doctor said everything was ok and prescribed antibiotics as he said it was “just” an infected toe nail.  All was well but 3 days later whilst I was changing her nappy at midnight on 2nd July 2005 I noticed a   huge lump in her groin.  I cried all the way to Westmead Children’s Hospital.  I knew something was seriously wrong. 

When we got to the hospital, we found out the infection in her toe had went to her lymph gland and she would have to be on a drip with antibiotics for a couple of days.  That was just the start of the long horrible nightmare we were about to enter into.

 

THE NIGHTMARE

The following morning in hospital Aliyah had a routine blood test and at first the doctor thought it was a mistake as there were no Neutrophils (white blood cells which fight infections) in her blood so they re-did the test.  The test came back the same. No Neutrophils.  This is why a small little infection turned into something so big.  That was the beginning of the battle.  We were so upset, words cannot describe it.

 

Aliyah’s condition is described as Severe Chronic Neutropenia which is an extremely rare blood disorder and probably one chance in a million of it happening.  We found out that you can’t live long without neutrophils and if left untreated she would eventually get an infection that would kill her. Unfortunately it wasn’t going to be a couple of days to make Aliyah well and the hospital was going to be our home indefinitely as she had to be on a cocktail of antibiotics.

 

We had found out that the infection in her toe had actually gone to the bone so it was quite serious and she required very strong antibiotics to stop it from spreading.

 

FINDING AN ANSWER 

At first the doctors thought that there may be some antibodies in Aliyah’s blood which I had passed on during pregnancy which may be killing the neutrophils and it may eventually go back to normal but unfortunately after tests it wasn’t the case.  Doctors tried 3 different injections daily for weeks to try and get the cells to start developing but nothing worked, which was very unusual because in most cases the person would just be on an injection called GCSF which would make neutrophils.   A doctor has told us that it is very rare not to respond to this treatment and there would only probably be around 5 in the world who would not respond.

 

Being in hospital was very draining.  Sleep was non existent and George tried to go to work but it was so hard as his mind was on me and Aliyah.

 

Aliyah slowly stopped feeding from my breast and instead drank from a bottle, but eventually she wasn’t drinking enough so they then decided to insert a nasal gastric tube to feed her.

 

 After numerous bone marrow aspirates and tests, the last resort was a Bone Marrow Transplant.  We were terrified as we had no idea what that entailed.  The doctors gave her a 50% chance of making it.

 

During this time Aliyah didn’t even look sick, she was a happy baby and people were quite surprised when they would come to visit.  She looked like a normal baby.

 

Aliyah also developed a fungal infection in her mouth which ate away most of her bone in her palette of her mouth which caused a hole in the roof of her mouth.   This was probably why she stopped feeding. The doctors told us that the infection may have gone to the brain and if it had, there would be no chance and we would just take her home and “spend quality time with her” as there would be nothing they could do.  As any parent could imagine, this was devastating news and we cried constantly all night.  The next day Aliyah had an MRI and operation to try and get rid of most of the infection, and we had found out that the infection didn’t go to her brain, we were so happy!  She had to go on anti fungal medication and were told she would have to begin to start chemotherapy for the transplant very soon, as soon as they thought the fungal infection was under control.  It ended up being a couple of weeks after.

 

 Another hurdle was that we had also found out that Aliyah has a very rare bone marrow type and we could not find a matched donor anywhere in the world, so the best we could do was my husband who was a half match.

 

 On top of all Aliyah’s problems she then had to have a tracheostomy put in as she was having difficulty breathing because of inflammation in her throat and ulceration caused by her nasal gastric tube.  I was devastated with this as it was yet another problem.  After the operation to put the trachy in she went to ICU. And there she began chemotherapy, Aliyah had her bone marrow transplant on 20 September 2005

 

SUCCESS!

Aliyah’s new bone marrow began to engraft after 10 days which is very good.  She finally had neutrophils!!  This was great news as it would stop the awful fungal infection from spreading to the brain.  The only down side was because she didn’t have a good match donor the bone marrow had to be T-cell depleted which meant that she would not have T-cells for around a year (T-cells fight viral infections). She would be very susceptible to getting viruses, thus we would have to be extremely careful with human contact.

 

 NOW COMES THE HARD PART!

Aliyah spent around 7 weeks in intensive care.  She had to be on a ventilator as she got very bad mucositis (side effect from the chemo) and VOD of the liver (blood clots in the liver which is also a side effect of chemotherapy) and had fluid on her lungs.  Aliyah began to lose all her beautiful dark hair and she also got “chemo burns” all over her body. It actually looked like she had been burnt with fire.  She was very sick, though she kept up her great personality of smiling and watching Winney the Pooh on her portable DVD player. It was weird not hearing her laugh or cry because you can’t hear a voice with a trachy.

 

Having a tracheostomy can be very dangerous, as we found out.  Whilst she was in ICU she vomited (another problem, Aliyah had very bad reflux, she vomited frequently) and it blocked the trachy one day whilst I was holding her.   Luckily the doctor was there and he worked quickly, she need CPR but she recovered quickly.

 

All throughout Aliyah’s treatment she needed frequent blood transfusions and platelet transfusions (some times daily).  She would also look better after a blood transfusion as it would make her cheeks rosy.

 

After a couple of weeks of treatment for her VOD she began to breath better and ended up coming off the ventilator.  We were very pleased and moved back down from ICU to the ward.

 

ALMOST GOING HOME!

When we went back down to the ward the doctors said they were very pleased with Aliyah’s progress and we could possibly go home soon, as soon as 2 weeks!  We were over the moon!  I had been in the hospital with Aliyah for 4 months and I couldn’t wait to get her home.  The only thing was, she would probably go home with the trachy in, so my husband and I started to learn to care for the trachy (which required frequent suctioning and changing the tube once a week).  We began to be confident with everything to do with the trachy and we were ready to go home soon.

 

ROLLERCOASTER RIDE!

Aliyah started breathing weird a week or so after being transferred to the ward.  Her oxygen levels went down to the low 80s (should be over 95) and she was breathing heavily.  She ended up having to be on a little bit of oxygen.  X rays showed a lot of fluid on the lungs so she had to be on medication to make her urine output higher and she was on strict fluid restrictions which would make her lose weight but they thought it would be for the best.

 

Aliyah seemed to be doing well after a couple of weeks but then she contracted a virus in her gut.  We knew viruses were dangerous as she didn’t have T-cells but she would have to be on a strong medication once a week to treat it.   After her first course of the medication, Aliyah’s oxygen levels dropped and they needed to increase her oxygen requirement drastically, they thought this was because of the fluid they had to give her before and after the treatment.  She basically got fluid overloaded.  As usual, she recovered.

 

I had always been concerned about Aliyah’s hearing as sometimes I’m sure she couldn’t hear me.  We had her tested and as I thought, her ears were full of fluid and she could only hear muffled sounds.  This could have been caused from the strong antibiotics she had been on or the fungal infection.  We would have to wait to see if it would be permanent.  Were we going to now have a deaf child??

 

Aliyah also developed a problem where she couldn’t tolerate much milk.  She was on continuous feeds through her nasal gastric tube but would often vomit. When I say vomit, I mean huge vomits where she would lose her breath and keep vomiting sometimes five in a row.  The doctors were then talking about a procedure to put a button in her tummy to feed her through that.  Yet another thing to worry about!

 

BACK TO ICU

On Wednesday 14 December 05 at around 8.30am, as I was getting up to get Aliyah dressed for the day I noticed on Aliyah’s monitor that her oxygen levels were down in the 70s. I didn’t think the machine was working properly.  I got a nurses attention who came in and the next minute Aliyah was gasping for air.  Doctors came from everywhere and they ended up stabilising her and taking her up to ICU.

 

She seemed to be stable when we left her on Friday night (we couldn’t sleep there in ICU, so we had to sleep at home), then we got a phone call at midnight, “come straight away, It doesn’t look good” the nurse said.

 

We were hysterical, we called our parents who also rushed to the hospital. Luckily we only lived 15 minutes away.  When we got there, there were a number of doctors standing around her.  Again, she was stable but she had lost consciousness.  They are unsure why. 

 

SHE’S GONE

Aliyah was ok the next day but on Sunday that was when it all went down hill.  I had told the nurse that she wasn’t “herself” she wasn’t looking at me and just slept which was unlike her.  Next minute she changed colour and her heart rate dropped.  The doctors came again.  Our baby had a cardiac arrest.  It took 40mins to revive her.  “Thank God” I thought to myself when I was told her heart was beating but I then asked the doctor about brain damage.  He had told me that there is a high risk she had sustained brain damage but they would be unsure as to how much. 

 

During the resuscitation they inserted 3 drains into her lung to drain the fluid out, they had her very highly sedated and ventilated.  The doctor told us that research had proved that if they keep the patient cold it may reduce brain damage so they had our little baby on a cooling mat which kept her around 34 degrees in temperature. 

 

The doctors decreased the amount of sedation 48 hours later and let her body temperature increase slowly she began to open her eyes, though we found out, she was having seizures, that’s why she was moving and opening her eyes.

 

Aliyah was given medication for the seizures and we were told things were not looking good.  She had an MRI which showed significant brain damage and there would be no chance of survival. 

 

Her ventilator was turned off and she died in my arms at 11.30pm on 23 December 2005, she was just over 6 months old.

 

DENIAL

I was in severe denial.  I thought Aliyah was going to wake up after she passed away, she ALWAYS recovered.  I lied next to her in her hospital bed, after her heart stopped.  I stared at her face, waiting for her to wake but she didn’t.  It couldn’t be true, I thought to myself.

 

I thought I was going mad, I didn’t want to leave the hospital. It had been my home for 6 months. It was strange leaving.  We went back to my inlaws house, we couldn’t bear to go home.

 

All our family and friends were devastated.  They had watched what we had gone through and stayed with us during her final days.  They were a great support and without them we could not have made it through.

 

Aliyah was buried on New Years Eve in a little pink casket.  To me the actual funeral wasn’t that sad, I think I was numb.

 

MOVING ON

I constantly think we would have been great parents, we would have given Aliyah the world.  Why did this happen to us? Especially after it took us so long to have a baby.

 

Aliyah is gone.  We are still not 100 per cent sure why she had the cardiac arrest which caused her brain damage.  I still cry every night, I am not sure why but during the day I am ok but at night I just cry.  I feel very lost.

 

I would really like to start a charity for children with rare blood disorders because we had found that most charities look after children with cancer or leukaemia but not other disorders which require a bone marrow transplant.  I am starting to make enquiries how I go about doing this.

 

George and I are definitely going to join up to be bone marrow donors and also donate blood regularly.  I’m sure Aliyah would have had close to 50 blood transfusions during her time in hospital and sometimes it was actually quite a wait as the blood bank was running low.  

 

Questions are still left unanswered as to if I was to have another baby would she/he also have Severe Chronic Neutropenia?  It is very worrying as I would not want my baby or my family to go through the awful ordeal we have had to go through.  It has been a nightmare and all I can hope is that the pain will ease so we can begin some sort of a normal life once again. 

 

I miss my baby so much it hurts, I miss her smile and most of all I miss holding her. If you have healthy children, don’t take them for granted, cherish every day you have with them and treat it like it is your last.

 

 

 

Christelle Dardagos