Logan has Pulmonary Atresia with Ventricular Setpal Defect (VSD), Right Aortic Arch, MACPAS, and 22q11 deletion which is a chromosome deletion aka DiGeorge syndrome
5th September 2008 I found out I was pregnant with my baby boy
All of our scans were normal…a healthy baby or so we thought. My C-section was booked for 14th May and I couldn’t wait…huge wasn’t the word, everyone expected a big baby but Logan was a weeny 6lb 4oz.
Logan was born near the middle of May 2009 at 1.01pm . After 15 long months of trying for him he is a much wanted baby. We had a problem free pregnancy and were so happy when Logan came into the world. All was going great, we were discharged after 2 days in hospital and had 3 fabulous weeks at home.
When Logan was 3 weeks old he got a nasty cold that we had all had, he was so bunged up and saw the Dr on Monday 8th June where he was prescribed Saline drops for his snotty nose.
On the 10th June I decided to get Logan weighed. He had lost a couple of ounces and the health visitor Annette wanted me to see the nurse again as his cold was no better. We saw the nurse who then asked Dr Rudd to come in and assess his breathing. His respiratory rate was high and Dr Rudd wanted us to go to Queen Elizabeth Hospital (QEH) in Kings Lynn. In the lift of the hospital I thought it would be a waste of time, he only had a cold like we had all had and kids get colds all the time right?
Once in our side room the nurses came in and did the usual Obs on him. One nurse sucked all the snot out of his nose. It was horrible seeing that tube being stuffed down his nose.
A paediatrician then came in. She wanted a chest x-ray to see if his chest was clear. She then picked up a heart murmur. At this point I was thinking that’s OK sometimes they fix themselves!
So an ECHO was ordered. The x-ray was done then Dr Rubin came to do his ECHO. She was talking to her colleague with big words I didn’t understand… large overriding Aorta was mentioned a lot and Ventricular Setpal Defect (VSD). Dr Rubin then explained to me that Logan had something called Tetralogy of Fallot(TOF) and gave me a little booklet which I read 100 times over. Brain damage/death/open heart surgery/and bypass machine words stuck out at me and I cried pretty much all the time during our stay in hospital.
Logan was hooked up to a SAT’s monitor and oxygen tube for his nose.
On Friday 12th June we were transferred to Great Ormond Street Hospital in London to attend Dr Derricks clinic. He is a Paediatric Consultant Cardiologist. He did an Echo on Logan and confirmed Dr Rubin’s findings and also that his Pulmonary valve was missing akaPulmonary Atresia.
Logan was sent back to QEH to finish his antibiotics for his chest infection and to be taken off oxygen as that would make him more breathless.
A cardiac catheter procedure was done on 3rd July. We stayed in London for 2 days and did a bit of sightseeing while we were there. Logan was so good he had to be starved for a good 7 hours and he only cried the last half an hour.
All you think about is how can this be happening to my baby, is he going to make it and you basically feel like your world has ended and your not going to cope. Tears come and go, I was even scared to hold him at one point.
A diagnoses letter came through once home and Logan has Pulmonary Atresia with Ventricular Setpal Defect (VSD), Right Aortic Arch, MACPAS, and 22q11 deletion which is a chromosome deletion aka DiGeorge Syndrome.
The plan for Logan is joining up his collateral blood vessels as the angio showed he has high blood flow to the left lung and not so much to the right. So they want to join them all back up back to his heart and a conduit valve then close his VSD but leave a small gap as a blow off valve.
This will all be done once Logan is bigger as its a tricky operation. Since Logan’s diagnoses we have also found out our 5yr old son has 22q11 along with my husband, Lee. Its been a rough ride so far but you learn to take each day as it comes and I wouldn’t swap Logan for anything!
Wrote by Karen (Logan’s Mummy on Heartline)
Karen kindly gave her permission for CHD-UK to publish her story and photographs