Sudbury's Story

Thank you for letting me share my story because although in terms of many CHD stories we have been so fortunate I feel it is important that however minor a CHD may be the emotions are just as real and support is as much needed.

We were so excited about the birth of our son, a brother to our 3 year old daughter Anaya, his name chosen from an old English village his Great grandparents come from, of whom his Great Grandad is still alive at 92 and still walks the woods and chops trees for his fire in the winter! My pregnancy had been good with the exception of awful morning sickness from 6 to 13wks with the addition of a strange saliva condition where i would have to spit into a cup every 5 minutes. I spat about 7 cups a day it was disgusting but stopped at 13 wks. At our 20wk scan, we had a strange situation where the guy (he was a trainee) who was doing the scan spent ages over the heart and I was beginning to get really anxious when all of a sudden the machine shut down, when they managed to boot it up again they had lost a lot of it, another lady took over and we were quickly out of there in another 10 mins. I still believe the guy had picked up on something but was not confident enough to say anything. I am relieved because I would have stressed the whole pregnancy. Sudbury was born at 10.05am by c-sect at 40wks and 1 day as I could not dilate, this had happened with my first also. Nothing was picked up that day, he was of good colour, weight etc. It was on day 5, I had packed my bags and was waiting for my my partner Stuart to pick me up when the Paediatrician dropped in to check Sudbury. I had just finished feeding him and he mentioned that his breathing was a bit fast. I had also noticed this a few times but had not thought much of it as babies tend to pant sometimes and make strange noises. He listened to his heart and then calmly announced he had a murmur and that we should get it checked out.

I cannot explain how utterly shocked, horrified, mortified I was at that moment. Everything seemed to go in slow motion and i didn't understand what he was telling me. I asked him. He said your son has a heart murmur that is quite significant and we need to do an echogram and an ultrasound immediately. He left the room and my world just fell apart, the nurse came in and I was just standing there looking at him, sobbing. I honestly thought at that moment he was going to die. I had never heard of CHD or VSD or murmurs or tachycardia. I don't think i could have got through that day without the support of the wonderful nurses. I phoned my partner and told him we would not be going home and he needed to come now and drop Anaya off with friends. The nurses came with me as i wheeled Sudbury down for an x-ray first, I sobbed the whole time as I watched him stripped naked, his small body lying under the huge x-ray machine. He slept through it all. He is and was an absolute angel. He then had his ultrasound and an echogram and we waited for what seemed hours for the results.
 

A moderate sized VSD 7mm in the muscular section. A good place for it to be. Many spontaneously heal within 2 years. Nothing to be concerned about but lets monitor his oxygen levels. That's what they told me. How calm they were. What a mess i was. 7mm? That's huge i thought compared to his tiny heart. This can't be happening. He is going to die. More sobbing. The monitor was attached to his tiny foot, bleep bleep bleep, every so often the alarm would go off because he moved his foot and his oxygen levels would go down and i would run out into the ward for a nurse. They calmly explained it was nothing to worry about. But oh how i worried. I became obsessed watching the monitor until at 1am the midwife marched Sudbury out with her and told me to get into bed and get some sleep. She was an angel too. In the morning the paediatrician said we could go home and i was petrified. I didn't want to go. What if something happened, what if he didn't wake up or had a heart attack. That's when he finally sat me down and explained what a VSD was. That Sudbury was not going to die suddenly. If things did start to deteriorate he would enter into heart failure and the signs were not putting on weight, not feeding properly, excessive sweating etc. I was to bring him every week to be weighed and monitored. Okay i thought i can cope with this.

Thankfully my parents who were due to fly out from UK to see us in December heard the news and came out the next week and they stayed for 3 months without their support i don't know what i would have done. I worried about everything, hi sleeping, his feeding, he was too hot, too cold, crying too much, sleeping too much. I just wanted to get across that even though he didn't need surgery it didn't make it any easier, it was that fear that something could happen any second any minute that was out of my control. It affected the way i handled him with my daughter. I became over protective of him and shouted at her a lot in those early days when she rough handled him. i regret that. I cried a lot. I would be feeding him or changing his nappy and he would look at me with those big blue eyes and off i would go sobbing. He was and is such a happy baby, such a joy but all i felt was fear and dread and sadness.

He gained weight but slowly at first and seemed to struggle with his feeding. He was on bottle then so i could monitor exactly how much was going down him. At 7wks we went to see Cameron Ward. A wonderful guy who got us calmly through and awful experience of an ultrasound where Sudbury decided he had had enough and screamed all the way through it. We had to stop half way through so he could calm down. I managed to hold back the tears somehow. Finally some good news though. The VSD was a small/moderate at 4mm not as originally estimated at 7mm but Cameron put him on lasix medication to control his fast breathing. i was not happy about this but he was right. His feeding picked up and he began putting on weight and lots of it.
 

In December, the doc said he didn't need to see us again until Feb and Cameron would perform another ultrasound in March. Sudbury has gone from strength to strength. He started rolling at 3 months and at 4 and half months is almost crawling. He is not so quiet anymore and displays more determination than I have ever seen in a baby. More strength than his mother...
This story does not have an ending as all of you know CHD is a journey. I have been through many emotions, terror, anger, sadness, guilt...so much guilt...was it me.. did I not eat the right foods.. did I not take the right vitamins...., denial has been the latest emotion, i have found it very difficult to join any support groups and this is the first time i have sat down and wrote about my feelings...because joining a support group would be admitting that my son had a defect....i kept telling myself its minor, no one will be interested in my story, but if there is 1 in 6 with CHD then there are those out there with similar experiences but you never hear of those and they need support too.

Update 8th Feb 2009

Recent check up at 20 weeks, Sudbury's murmur has softened and the paediatrician believes the hole may have begun to close. We will find out in March by ultrasound when Cameron Ward checks him out. Will let you know details. Hopefully he will also come off his meds then as well.

Update 13th March

Sudbury's hole has closed significantly it is now only 2mm and he has been taken off all meds. Cameron does not want to see him for a whole year by which time he thinks the hole will have gone.

 Great news. On a not so great news he has now been diagnosed with a peanut and nut allergy which is quite severe. But we will face this challenge as a family as we always do.

Update 4-5-2010

Well Suds is now almost 20 months and is living life to the full! His favourite toys are his Thomas trains, his cars and his ride on trike which he likes to take to the highest hill and race down! In March he went for his heart check up and we were told that although the hole has not completely closed yet, it is so small it is not effecting his body. The pressure on both sides of his heart are normal. He will not need surgery and even if the hole never closes, it is okay, we are to treat him as a normal little boy. Cameron will keep a friendly eye on him and will see him again in two years time! 

On his allergy health issues, his cashew nut allergy has dropped off but he remains allergic to peanut. We are ever hopeful this too will disappear however the UK say they will have a cure available in 3 years time for peanut sufferers. 

We are so thankful to the doctors and nurses who have helped us on Sud's health journey and for ever indebted to them. We are thankful to our daughter Anaya who is almost 5 now and has been a wonderful help and loves her brother so much. To watch them play and cuddle and laugh and hold hands is truly special. We know we are extremely lucky with this outcome and our hearts go out to those beginning a journey with a baby diagnosed with CHD. Be strong and know that you are not alone.

Rachael