Hanalei's Story

We have been together 7 years and finally were married on the 7th April 2001. We have a son Cai, a daughter Rebekah.

After Cai was born, we had to have fertility tablets to have Rebekah. So we thought we were lucky to have one of each. (boy and girl). After Rebekah was born we discussed having another child and decided we would try when Rebekah was about one year old. Mother nature had other ideas.

I fell pregnant naturally when Beck was only 3 months old!!

From the moment of conception I had severe hyper Rhemesis (severe vomiting) so was constantly in hospital on a drip to be dehydrated. Also was given medication to help with the vomiting, injections and suppositories. Nothing worked.

By the time I was around 7 months I was put in hospital because of severe polyhydremnios. The doctors were concerned about cord Prolapse and Hanalei's irregular heartbeat.

They decided to deliver Hanalei by C section at 37 weeks. So into the world she arrived on the 15th December 1999. Hanalei weighed 9lb 5 oz. She was rushed off to ICU (Intensive care unit) there she was given oxygen. She had respiratory problems and problems with low blood sugar levels.

Hanalei stayed there for about 4 days and after 7 days we were allowed to go home. Whilst in hospital Hanalei was put under lights for jaundice. Also she would cry all the time and would not feed properly.

In kilograms Hanalei weighed 4.440 born but when we left the hospital she weighed only 3.270. On her first visit to the Child Health Nurse she weighed only 2.995kg.Still no one believed there was anything wrong. Even though she was Crying, screaming, and was hungry all the time, failure to thrive, concave chest.would not feed properly etc. etc.
Still no one would listen to us. Suddenly Hanalei took a turn for the worse, when she developed severe breathing problems. I Took her to the Clinic Nurse at Paediatrics outpatients here and they rushed Hanalei over to the Royal Children's Hospital under a specialist Respiratory team.

Hanalei was three months old when all this happened and we almost lost her, She was taken to thretre where they did a Bronchoscopy—miscrope to check out her airways. They found she had Tracea Laryngea malaise (airways that looked like squashed slits and very floppy): so this was the cause of all her breathing problems.

More tests followed—Barium swallows and modified Barium Swallow. These showed Hanalei had severe gastric reflux. They put her on Zantac and Locex for this and also put in a Nasal Gastric Tube. This stayed there until Hanalei was around 8 months: as she had learned to pull them out.

Also during this time we saw a Geneticist to try and find out what was wrong with our little girl. We had numerous blood tests and skin biopsies done. The geneticist tested Hanalei for Williams, Noonans, Pallister Killien Syndrome, all were negative.

Also it was thought she might have Oppitz Fry Syndrome, which normally only boys get.

Hanalei had and still has the following:

  • Failure to thrive
  • Large Mouth and tongue
  • Small body—thin- looks like she has malnutrition
  • Palmar creases on both hands
  • Lightly turned feet
  • Very pale skin
  • Very tight curly hair
  • Heart Arrhythmia
  • Poor Muscle tone.
  • Severe Developmental delay
  • 2 small holes in the top of her heart
  • Slight thickening between the two sides of the heart
  • High risk category regarding infection.

With Hanalei we are waiting test results from Lateral Spinal x rays. Also she has fluid build-up in both ears and we are waiting to see an ear nose and throat specialist. Doctors are also considering a tummy button, but are worried about the risk of infection. Hanalei has also had recurrent respiratory infections, ear infections, pneumonia on the lower left lobe of her lung, mystery illnesses.

Each time she has been ill she has lost up to 500gms in 24 hours. Also they drip her to rehydrate her and feed her antibiotics as a precaution. They run heaps of tests and other things on her to make sure they are treating the correct illness.


Love Marie, Neil, Cai, Rebekah and Hanalei's

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