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MISSED DIAGNOSIS!

It's hard to believe that only 18 months ago we were a normal family with three beautiful, healthy children and excited that a fourth was on the way. I have been fortunate to be one of those women who cruises through pregnancy and labour. In fact, one thing I have always said was that my job in life was to carry and give birth to children.

However, at my 17-week scan, my husband came with me, believing that it would be a fun to see our baby's heartbeat and its little limbs moving around. After a short while the doctor and the nurse became quiet and looked rather worried. Then came the heart-breaking words, "We are sorry to tell you both, but your baby has a very severe case of 'hydrocephalus', which means fluid on the brain." They told us that this was a condition that is not usually picked up on a scan until the 30 week mark and that the child would either die in the womb, during birth, or just after birth. We were considered "very lucky" as we could just abort, go home and try again. When we asked if there was any chance this child would live, the answer was, "Yes, although it would be like a vegetable and probably never leave the hospital."

It didn't take long for those words to set in. My reaction was to immediately tell the doctor that this was not my child, but rather a child of the Lord. If anyone decided to end its life, it would be the Lord Himself, not me or my husband. It hurt so much to think that someone could look at that little beating life and treat it like a piece of rubbish. The doctor stated that after we had a couple of days to let the news set in that we would do the most logical thing and abort our little baby. But the words of God that "children are a blessing from the Lord" were planted in my mind. God means all children - well or unwell, pretty or ugly, able or disabled. God does not discriminate. He loves all his children and commands that we do too.

Psalm 139:13-15 kept coming to my mind. God says that He makes all the delicate inner parts of the body and knits them together in the mother's womb. He sees each child before they are born and maps out all their days ahead of them. I dreaded the thought of having a child like this, but I knew that God created this little child. He gave me His peace. I knew that He would never leave or forsake me and that He would be my strength. We went along with the pregnancy, feeling very numb.

We didn't quite know how to pray. Did we ask for healing? We both knew what we wanted to happen but we also wanted to be able to accept God's will. In faith, we prayed for healing. In fact we begged the Lord to heal, but if it was not the will of our Father, we would claim His promise to be our strength to guide us in whatever circumstance lay ahead of us.

Five weeks passed. Four doctors had been pushing us to abort our child during that time, for "our own good". It was time for the next scan. We saw the top ultra-sound specialist in Western Australia. He spent a long time looking from one angle, then another. He said nothing. He started tapping his desk, looking again at the scan, scratching his head, sighing, then looking at the scan again.

He then looked at us with a huge smile and said, "There is nothing wrong with this child." You can't imagine how our hearts leapt. They leapt carefully, mind you - because at this stage we had really come to an acceptance of the situation. We asked many questions, one of the first being, "Did they make a mistake?" The answer was, "No." We told the doctor that this then had to be a miracle given by the Lord. However, doctors do not like to hear this. He suggested that since this condition does not reverse he would give the term "medical phenomena" and advised us that this case would go before five ultra-sound specialists to see if they all agreed that the original diagnosis was correct. Elated, he then shook our hands and told us to go home, be happy, and you will have a perfect child. More scans proved that there was no fluid on our baby's brain and that a perfectly healthy brain was developing.

The case did go before more specialists. They all agreed that the original scan proved that the baby had water on the brain, not allowing it to develop and that the brain stem was hanging in the fluid. The second scan was looked at. Again, they all agreed that there was no fluid, a whole brain was present, and the brain stem was standing up, exactly as it should have been. Curiosity made me ask the question, "What was the conclusion of the doctors?" I was told that they shook their heads and went on to the next case. They also mentioned that this would be placed in a book of statistics as having reversed.

The rest of the pregnancy we were overjoyed that our baby had been healed. We were asked if we wanted amniocentesis tests to see if anything else might have been wrong. We couldn't see the point. We would not abort our child anyway.

On July 18th, 1995 Emily Marianne was born. I looked hard at her. She had a beautiful little head and face, quite opposite to what a baby with hydrocephalus would have. It was a special moment.

Our joy was a little short lived I'm afraid. Emily was only about a minute old when the doctor told us that he believed she had Downs Syndrome. My immediate reaction was disbelief, then I looked at her again and I knew. I was terribly upset and told the doctor that they were wrong all along. It was never Hydrocephalus. My faith flew out the window. My doctor then told us that I was wrong. Downs Syndrome had nothing to do with Hydrocephalus - the two conditions were not related. Downs Syndrome could not be picked up on a scan, only by blood test or amniocentesis. She in fact had both conditions all along, one had been reversed (the most horrific one, mind you), one remained.

Three days later the blood test came confirming what we already knew. We cried many tears, it was not as devastating as I imagined. I held, loved and cared for this beautiful, peaceful little baby. I already loved her so much, it just didn't seem to matter.

Emily is now 13 months old. She is the most contented, happy, smiling baby you could imagine. She has done nothing but enrich our lives. We look at her and think that if she did not have Downs Syndrome she just wouldn't be our Emily. We also look at her and remember what could have been, or that she could have died. We were given the opportunity to ask God for His healing hand upon her and He gave it. Yes, she does have Downs Syndrome but she is happy and healthy. She is not sickly, and is developing physically. She is a delight to us and to everyone who knows her and we believe she is exactly the way our Almighty God wants her to be.

LISA KOSSEN

Perth, Western Australia

Ron and Lisa have four treasures, Christopher, Jodie, Carly and Emily.

 

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