On February 20th, 2004 I went for a routine 19 week ultra-sound with my husband Noel. That morning we learnt the news that there was something seriously wrong with our baby's heart. A second ultra-sound later that day confirmed that the left side of the heart had not developed. We decided we wanted to know the sex of the baby, so that we could give the baby a name and in doing so an identity. We were both delighted to hear that the baby was a little girl, Amy. A few days later I had a Fetal-echocardiogram at Children's hospital Boston. It was explained to us that Amy had a congenital heart defect known as Hypo-Plastic Left Heart Syndrome or HLHS.

We searched the internet looking for information. Much of the information available on-line is out of date and not very optimistic. We were given hope when we found a website called 'Little Hearts' (which can be visited through our links). This website shares pictures and stories of children living with HLHS. It gave us hope that Amy would have a better quality of live than we had imagined.

This heart defect is fatal if it is not treated within the first few days or weeks of life. It is not possible to reconstruct the left side of the heart. Amy would need a series of three staged open-heart surgeries to enable the right side to do the work of both sides. The first stage is known as the Norwood procedure. This allows the right ventricle to pump blood to both the lungs and body, and is performed a few days after birth. The second stage is known as the Bi-Directional Glenn and the third stage is known as the Fontan. These later surgeries create a connection between the veins returning blue blood to the heart and the pulmonary artery.

On July 14th, 2004 I was induced at Brigham and Women's hospital (BWH) in Boston. Amy was born on Thursday, July 15th, 2004. She was taken to the intensive care unit at BWH, where she was stabilized and started on an intravenous medication known as prostaglandin. Amy was then taken to the cardiac intensive care unit (CICU) at Children's hospital Boston (which is attached by a catwalk to BWH). On July 19th, 2004 at 4 days old, Amy had her first open-heart surgery. We can not praise or thank Amy's surgeon Dr. Del Nido, cardiologist Dr. Marx and all the medical staff at Children's hospital enough.

Our days since then have been busy. Amy had her second surgery, the Bi-Directional Glenn on December 13th, 2004 and is awaiting her third and hopefully final surgery. After the second surgery Amy began physical therapy to help strengthen her upper body. This aided Amy to meet milestones like rolling, sitting, crawling and walking.

Amy has some feeding issues. We decided against a G-tube (feeding tube through her stomach) despite Amy's low weight (2nd percentile). Amy sees a speech pathologist weekly for her feeding issues. Amy had her tongue clipped in April 2004, as she was tongue-tied. She had a severe gag reflex and some sensory issues which through working with her speech pathologist have been overcome. Over the past few months Amy has become more confident and adventurous with food.

Amy is 19 months old now. She is a beautiful, intelligent and sunny little girl. She is deeply loving and compassionate. She loves hugs and kisses, baby dolls, teddy bears, animals and Elmo. On the outside she looks like any other happy toddler.

Amy's oxygen levels have dropped and we now anticipate the Fontan will be performed later this year.

Thank you for taking the time visiting Amy's website. If you wish to follow Amy's progress, we frequently post regular updates. Feel free to sign Amy's guest book @ www.amypoynton.com

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