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Madeleine Eva Malherbe
14/10/2004 - 24/12/2004

A celebration of her eternal life

I don't really know where to start what I'm going to say, so I borrowed a piece from a speech made by another father at his daughter's funeral, who also died of Edward's Syndrome:
There once lived a wealthy man who had ten children. In one day, he lost everything he owned; and the very same day all seven sons and three daughters were killed when the wind collapsed the house where they were partying.
The bible says that this man, Job, got up, tore his robe, and shaved his head; and he fell to the ground and worshiped God saying,
"Naked I came from my mother's womb, And naked shall I return there.
The LORD gave, and the LORD has taken away; Blessed be the name of the LORD."In all this Job did not sin nor charge God with wrong.
Job 1:21-22 (NKJV)

It was in the beginning of the book that the answer to the big question, "Why?" was given. The bible says that Satan is the one that afflicted Job. We believe that Satan is the one who has touched our family with death. He is the one that wants us to blame and curse God. But, we will Praise God. He is the one who has made us. We will Thank God. He is the one who has given us life. We will worship Him. He is the one who gave us our miracle, Madeleine. He is the one who will hold her in His arms until we see her again.

Madeleine Eva Malherbe was born on 14 October 2004, three and a half weeks premature. This was all a bit of a shock for Helen, who thought she would be going home that day after being admitted to hospital the previous day, not feeling too well.

"Not feeling too well" turned out to be premature labour and Helen had driven herself to hospital! It was decided by the doctors not to suppress the labour, but allow Madeleine to come out, as she clearly wanted to.

Helen and I were very excited that we were finally going to see the little girl we had been waiting for. During the pregnancy, Madeleine already started filling our lives with joy, frequently letting Mummy know she was there with some very hard kicks. It was also a thrill for me when I could finally feel the kicks and even see some of them!

The day of Madeleine's birth, things seemed to happen very quickly. At 9am, we were still discussing whether she would be born - by 12 noon we were parents. Madeleine weighed 1.87kg and was 46cm long.

Madeleine's birth was both a joyful and tense experience. She gave a little cry as she came out and immediately stopped breathing. Both her nostrils were blocked. The doctors quickly rushed her off to the Neonatal ICU, leaving an anxious mum in the operating room and a half-fainting dad trying to follow behind. The doctors stabilised her, but it was evident there were some other problems.

However, it was only a week later that we received the Trisomy 18 diagnosis. Trisomy 18, or Edward's Syndrome, is the second most common chromosomal disorder after Down's syndrome. It basically means that, instead of the usual two, Madeleine had 3 chromosome 18's. Babies with this disorder vary immensely in symptoms and appearance, but only 10% live past their first year.

One other key thing was that Trisomy 18 babies have a susceptibility that healthy babies don't. That means they succumb to things that would not be fatal to a healthy baby.

In Madeleine's case, she had an underdeveloped brain stem, meaning that she often 'forgot' to breathe. She also had a hole in her heart. She had very little outward characteristics of Trisomy 18 and was of course, with our combined genes, very beautiful!

Helen and I took the news quite hard, but we immediately decided that, if Madeleine was going to make it, we would need to exercise our faith in God and also give her all the love we possibly could. We visited her constantly in hospital and she proved to be a real fighter, growing and thriving.

We had some tough decisions to make as well, most notably that Madeleine should not be kept alive on a ventilator again once she had come off it. We prepared for that day by having a dedication ceremony for her in the ICU, where she also got to meet her grandparents, as well as all her uncles and aunt. Afterwards, Helen held her as she was taken off the machine. She struggled at first, but eventually her breathing stabilised. She was still fighting and it was now up to her and God.

We continually prayed and believed God for her healing and she continued to thrive.

Finally, she was able to come home after five weeks in the ICU. It was a thrilling, but somewhat scary experience for us. We made sure that we had everything we needed to take care of her, which included oxygen, an apnoea mat to tell us when she stops breathing as well as knowing how to resuscitate her should this happen.

Every day with her was a blessing. She gave us a couple of scares, having stopped breathing numerous times, with us resuscitating her every time, but she also gave us many more moments of joy.

She absolutely loved her baths and Mummy gave her regular massages, which was her favourite thing in the whole world! We would sing to her and Daddy even danced around the room with her. She would often pout when she liked something and had a few pouts reserved especially for the camera (as you'll see on some photos)!

The weekly visits to baby clinic were also very exciting, as we could then see how much weight she was gaining. She was truly thriving and we tried to make her life as happy and loving as we possibly could.

Madeleine passed away at 12:30 am on Christmas Eve 2004. She had had a cold and chest infection and we believe that, in the end, this was just too much for her little heart.

While we are grieving her loss, we are completely at peace about our decisions for her care and comfort, and are relieved that she no longer has to struggle to come back from her apnoea episodes. Her life was truly a blessing to us and to many others as well. We have learned much, and we know we have much still left to learn from her.

The main thing we learned is that God is in control. We don't know why he chose not to heal Madeleine, but we know that she is now safe with Him and that one day we will see her again. We do cry, but we are Happy. We have found hope in Jesus Christ. We know and are confident that Madeleine is in Heaven. This is not a wish or a fairy tale; but, faith in the written Word of the Almighty God. It is not a new message, but a reminder of the plan of God for everyone who believes.
While we miss Maddie every day, we will see her again…

Arnaud Malherbe