Hayden's Story

(Double Inlet Left Ventricle, TGA, Coarctation of the Aorta, VSD and ASD)

My husband and I were extremely excited to be heading out for our first Ultrasound of pregnancy number two.  Everything was going perfectly and the sonographer was moving through quickly. Lastly she came to his heart. She seemed to be looking at this for quite a while. I started feeling nervous so she reassured me by saying that bubby was in a bad position and that she would just get another sonographer to have a quick look and see if he can get a better picture. He looked for a minute and walked out. Even to my untrained eye I had noticed that they could not get a clear picture of all four ventricles.  

Four days later my GPs office called and booked in an appointment for us. My GP had confirmed my fears and said that an ultrasound at Mater Mothers would be required to rule out a hyperplastic right ventricle. For the next couple of days I was either laying on the couch crying or on the internet looking up everything I could about Congenital Heart Disease. At the time I thought I was going to lose my little boy.

I then had an ultrasound at Mater Mothers Hospital with a cardiologist in attendance.  Afterwards he explained that from what he could see bubby had a complex mixture of problems. A double inlet left ventricle, L malposed great arteries and severe coarctation or interruption.  He explained in detail what this all meant and how this would affect us.  He explained that we had three options first was to terminate the pregnancy  before twenty weeks, second was compassionate care (give birth and take bubby home where he would pass away in a couple of days) or to continue with the pregnancy and put him through a series of three operations that would help his heart work the best that it could. I had not known any other person to have been born with heart disease and thought that with problems of that nature my baby had no chance.  I hated that I had to make this decision.  I felt that if I terminated the pregnancy his life would not be acknowledged and he was very much a part of our family.  We decided to give him the option of whether to stay or go and with this decision we named him Hayden.

For the remainder of the pregnancy I went through every emotion possible. I was twenty one and had one healthy little girl and had not thought that this could happen to my baby, so I continuously questioned everything I did wondering if I could have caused this. I would wait until my one year old daughter and husband where asleep before I would cry, I was so scared.  However with the support of my family, parents of heart children that I met through Heart Kids forum and my new found faith in the Lord I made it through each day. 

From thirty six weeks we stayed at Ronald McDonald House South Brisbane, awaiting Mr Hayden’s much anticipated arrival. The house was a true blessing. We received support from the staff and the extremely generous volunteers. We also gained strength from the other families who also occupied the house. 

Hayden arrived on the 10th of September 2008 at a healthy 3540grams. In the birthing suite I had mixed feelings, I was excited but extremely scared. So many Doctors where popping into introduce themselves and I could hear them getting the resus bay ready. After he was born he was popped up on my belly while my husband cut the cord and then he was quickly taken into the next room. All I could think of was how purple his precious little head was. They took him up to the Neonatal Intensive Care Unit where my husband followed. As soon as I was able they put me in a wheel chair and pushed me up to introduce me to my precious little man.  He was so gorgeous and looked so much healthier than I ever anticipated.  He didn’t even have oxygen on, just a saturation probe, heart monitor and a drip (prostaglandin) running into his hand. I would sit there for hours holding him not wanting to put him down.  After birth he was diagnosed with Double Inlet Left Ventricle, Transposition of the Great Arteries and Severe Coarctation of the Aorta.  One of the surgical staff explained that they would be going through an incision through Hayden’s back to repair the coarctation as well as put a band on his Pulmonary Artery to limit the blood flow to the lungs. Hayden had his first surgery two days later.  He opened his eyes for the very first time as we transferred him over to theatre.  We reluctantly said goodbye as they took him away.  My heart was absolutely breaking.  Five grueling hours passed by before we received the call saying that Hayden was in intensive care.  He looked gorgeous even with the machines. I think I had hyped myself up and anticipated him to look so sick. He had a short six day post operative stay.  We expected to have been there for so much longer. Our Mr Hayden was an absolute Champion and to look at him you would not have guessed that he had a CHD.

Our aim from there was to get him to put on weight and keep him healthy.  To help us with this we had several appointments with his Cardiologist, Pediatrician, General Practioner, Physiotherapist and nurses. I was surprised at how quickly he was developing. He has met every milestone faster than his big sister who absolutely adores him. At three months old Hayden had his first Catheter.  This was done to make sure he was alright to go ahead with his second surgery.  We watched them take him away yet again. This is the worst feeling I think you can have as a mother.  The cardiologist came out half way through and explained to us that scar tissue has narrowed the aorta where the coarctation was repaired previously and got permission from us to balloon his artery.  What was to be a day trip turned into a two night stay with Hayden on oxygen.  We found out that he had the flu and that was most probably the reason for his saturations being low. He did make it out of hospital on his big sisters second birthday.

Hayden again continued to do extremely well although his weight gain had slowed.  He was rolling around and spinning on his belly looking for his big sister Hayley.

Hayden’s second surgery (Bi Directional Glenn) was done at six months. He was taken in electively as he was still very well and hadn’t desaturated greatly. One of the surgical staff explained that the idea was to do the next stage now instead of waiting a couple of months when he would be noticeably sick.  The day came and we handed him over to a nurse who said that she would take great care of him. Another grueling six hours went by. I didn’t know what to expect when I seen his surgeon Dr. Nunn walking into the waiting room.  He explained that Hayden had done extremely well. They had disconnected the vein that delivers unoxygenated blood from the upper half of the body (Superiour Vena Cava) from the heart and connected it straight to the Pulmonary artery. They then completely closed off the Pulmonary Artery from his heart.  This left him with a free flow straight from the body to the lungs.  My beautiful boy still looked just as gorgeous in ICU. The first twenty four hours where terrifying as they had to chase him around a bit.  They explained that they were expecting this with Hayden. After the first twenty four everything started looking up and Hayden managed to do another fly by ICU with minimal complications.  He was very sore and had low saturations up on the ward but they explained that this would happen and that it would get better as his body got used to his new pressures. We had a seven night stay in hospital where Hayden flirted with all the nurses.