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| Noah's Special Story |
| In May this year, at 25 weeks pregnant, I was sent to Fetal Cardiology in London as the local hospital couldn't see the baby's heart properly. Thinking they were just going to confirm everything was normal, I got quite a shock when they told us there was anomalies in the heart's anatomy. They couldn't see what it was, but wanted me to come back for continuous monitoring. We were given options of amnio and termination, none of which appealed to us. I was 25 weeks pregnant, baby was kicking, and there was no way I'd have it taken away!! And even if there was something wrong, we'd keep it anyway! 2 scans later, and yet no diagnosis, I was given the option of being induced before my EDD, as they wanted to be able to scan baby's heart as soon as he was born. (By this time, we knew he was a boy!) So, on August 20th, we left for London, and four days later little Noah came screaming into this world with apgars of 10 and 10!! After a cuddle, he was taken to the resus, to be looked over, and they immediatly found abnormalities with his hands, feet and genitalia. He was then moved to NICU, where his heart was scanned by numerous people over the next two days. Finally, they all agreed on a rare abnormality called Left Pulmonary Artery Sling. The artery going from the heart to the lungs was going an unusal route, and was slinging past the trachea and oesophegus, potentially causing damage to the main airway! But Noah was breathing fine, so they saw no immediate reason to operate on him. He was sent to SCBU for further testing, and observaition. They also did karyotyping on him, to find out if this was all genetic. From a general ultrasound they found an unusual malrotation of his intestines. One week later, at exactly two weeks old, he had surgery to correct it, and removed his appendix at the same time, as it was sitting too high. Noah was then moved back to NICU post-op, as he was ventilated. When trying to extubate him, they found that the ventilation had caused the sling to go tighter on the airway. All the sudden, we realized, he could not survive without the ventilation. By this time, we had also gotten his karyotype back, and was told he has a unique unbalanced translocation of the short arm of chromosome 4 and the long arm of #18. (trisomy 4, deletion 18) Being the first reported case, they couldn't tell us much., but said all his health problems likely come from this genetic problem. The cardiologists finally decided to repair the sling. They were trying to work out a time with the ENT, as they needed a bronchscopy done before they could do the procedure.We were told there was a possible bad damage on the trachia, and they might have to perform a tracheotomy at the same time. IF the damage was far enough up. If it was too far down, they wouldn't be able to do anything for him... The surgery was schedualed. The first 2 hours were endless, before the ENT came out and told us what we wanted to hear. With the release of the sling, the trachia would be sore and narrowed but would soon be perfectly normal.2 hours after this again, they told us Noah was out of the open heart surgery and we could soon come see him. We were told everything had gone well and we could start celebrating. In the evening they started finding unusal things about him. The sats in his legs dropped and disappeared etc. They started to suspect clotting etc. At 12:15am Noah went into Cardiac Arrest, 2 according to our discharge notes.We were there, and I can't describe the feeling of watching your son having just died in front of your eyes.The moniters were going wild. I couldn't bear being there and left to stay in an outside corridor. Noah was gone for 5-7 minutes. It seemed like 5-7 hours. Amazingly he came out of it just fine. Nobody knew what had happened and he is known as the Miracle Baby! 3 days later he was successfully extabated, after 16 days ventilated. It was the happiest day of my life. Finally he was released to ourl ocal hospital and then home with us. We have since found out that Noah is deaf, Noah will need plastic surgery on his genitalia, corrective surgery on his rocker bottom feet, etc, but we believe the worst is all behind us. We thank God every day for allowing us to have Noah in our lives. |
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