Here follows the story of my Golden Sunshine.  When I was between 6 and 12 weeks pregnant with Giselle, I received hormone treatment during this period, in order to keep the pregnancy.  Throughout the pregnancy I had contractions and I had pre-eclampsia.  At week 32 I was hospitalized and 3 days later Giselle was born via a cesarean-section on 6 May 2000 at 12:00.  She weighed 3.1 kg’s and measured 51 cm. 

She had the following characteristics of BWS : macroglossia, hemihypertrophy, abdominal wall defects, diastacis recti, umbilical hernia and other hernias as well, advanced bone structure, somatic asymmetry, muscular hypertrophy, prominent occiput and macrocephaly.  Her kidneys were in a horse shoe shape, as one kidney, it later rectified itself, to two kidneys, but her tubes between the kidneys and bladder is abnormal implanted.  Her left kidney was more enlarged, but rectified itself.  Her liver and spleen were very enlarged.  Only her liver is still enlarged.  She is missing the 12^th rib on her left side and on the L5 spinal cord she has Spina Bifida Occult.  Her spinal cord is formed in a “S”-shape.  She had an abnormal pelvis, right hip and her bladder was smaller than normal and formed in a tower “A”-shape.  It seems as if her bladder rectified itself as well.

She was hospitalized for quite some time (weeks).  She had difficulty to suck her bottle and to breathe.  Due to the macroglosia, she was only nursed on her stomach otherwise her tongue would fall back in her throat.  She had major sleeping apnea, so we had the wonderful opportunity to sleep on my chest for at least two years.  I dreaded winter and colds.  Every time she had a cold, she would end up in hospital for oxygen.  She would turn blue several times when she coughed.  She couldn’t cough out flem.   So, for the first 3 years, we spend a lot of time in hospital.

A doctor told us, Giselle would grow into her tongue, but I knew it would not be the case and at 18 months she had a “V”-cut glossectomy.  At 24 months she had another glossectomy, which the doctor took off, excess tissue from the sides of her tongue.

Giselle crawled first, but took a while to sit, she couldn’t balance, but was clever enough to lie on her right arm and take what she wanted with her left hand.  She didn’t struggle with her eating.  I just can remember I was so worried about the fact that she may be mentally slow, but was clever enough to shook her head for a “no” when I asked if she wanted more food.  If I did give her more, she would have spit it out, or just let it flow down and out her mouth – this was at age 3 months.  She was speech delayed and started to talk at the age of 3, but after that, never stopped talking, in such a manner her brother is astonished of how much she can talk.

As beautiful as she is, she has the most adorable, loving and affectionate personality.  She does struggle though, to express her feelings.  Giselle turned 6 years this year, can write her own name and can write from 1 – 10 and can count up to 20.  She starts school in January 2007.