Theresa writes about the different diagnosis Rhy’s was given until after he was born when they finally said which CHD(s) he had.
I found I was pregnant with my first baby just a few days before my 20th birthday. Mark and myself were so happy. The pregnancy was like any other pregnancy. Morning sickness, swallow feet and hands, up until my 20 week scan that was!
It was October the 17th 2007. We went to our local hospital in our home town of Plymouth, Devon. I remember
we were so excited, we were going to see our baby and find out if we were having a boy or girl. When our turn came we went into a room and the lady started scanning my bump. She told us “we were having a little boy, but was unable to get clear picture of the heart, so we’d have to wait for the doctor.” So, we sat in the waiting room, laughing and thinking of names for our little boy. We were so happy, unaware of what was to come.
We went back into the room, where the doctor looked at our baby on the machine. He confirmed we were having a boy. He then broke the news that turned our world up side down! He explained our baby’s heart was not properly formed, and that he has a Ventricular Septal Defect (VSD) [a hole]. He said “we would have to see the consultant the following week, as he wasn’t an expert in hearts.” We went home, not knowing what to do or say. We couldn’t even tell people without crying. We were so upset!
“Rhys at the 20 week scan”.
The following week (25/10/07) we went to see the consultant. After the scan she explained to us “that she thought our baby had a condition called Tetralogy of Fallot.” By this point we had decided to call our baby Rhys.
The consultant, explained that Rhys could have a number of problems when born including Downs Syndrome, and possibly cleft lip. She said an Amniocentesis could be preformed to see if he does have these. I was told there was a small chance of miscarriage. I decided I needed to prepare myself if Rhys had other problems and went ahead with the Amio that day. After I had my bloods taken, and was told if I wanted a termination I could, but I’d still have to give birth and hold a funeral. There was no way I could do that, to my baby boy I had bonded with already. Mark didn’t want me to terminate either, but said he would stick by me what ever my decision, and was great throughout the pregnancy.
When home I decided to research Rhys’ condition on line, and came across a website called HeartLine. The people on there were families with children with heart conditions and knew what we were going through. They were all so helpful!
Rhys in NICU aged 1 day at about 15 hours
The Amio results came back about a week or two later, and were all negative.
The following Monday we went to see the heart consultant in Bristol. He explained our baby had a condition called Tricuspid Atresia, and could need 3 or more operations, the first one would be within a few days of birth and treated as an emergency. He said “we could be in hospital for up to 3 months after birth.” After this we had regular scans with the local consultant.
On the 8th of January myself and my mum went back up to Bristol to see the doctor again, I was 31 weeks pregnant. The doctor found a blood flow on the right side of Rhys’ heart and changed his condition back to Tetralogy of Fallot. He advised us I should give birth to Rhys in Bristol, although he said he didn’t think an urgent shunt procedure (the first operation) would be needed. We were so happy with this news. I was going to be induced on Monday the 25th of February.
The month flew passed, and soon came the 20th of February, less than a week before my induction date. I had my last midwife appointment, who told me Rhys was very, very low down, and definitely getting ready to come out. That evening my waters broke, I was 37 weeks and 4 days pregnant. We went to the hospital at 7pm as I wasn’t getting any contractions and they monitored me until midnight. I then went in an ambulance to Bristol Maternity Hospital.
The team there were great, they gave me picture of Rhys and tube fed him so I could feed him myself, also rang the delivery ward when the NCPAP (Neonatal Continuous Positive Airway Pressure) in laymans terms breathing equipment was taken off. As I had a bad birth I wasn’t able to see Rhys until he was 15 hours old. My first cuddle with him was amazing.
He was moved down to the cardiac ward in the children’s hospital later that afternoon. The same doctor who scanned me when pregnant gave Rhys a scan and told us that he has neither conditions.
Rhys is now 17 months old, and doing great. He has regular check ups. But to look at him you cant tell he has a heart condition. He acts like any other 1 year old, and is starting to walk. Most heart children have problems feeding and gaining weight. Rhys 21lb 11oz, and loves his food. So no problems there. He does catch everything going around due to him having a lower immune system compared to other children his age.
Rhys aged 1 with Mummy Rhys aged 16 months as of June 2009
Rhys has made us realise that even the worst case situation always have a glimmer of hope, and we call him our miracle child because his heart got a little better, when the doctors never thought it would!
Written by: Theresa Hawes
Photo’s are used with permission from Theresa Hawes.