20 weeks along in our pregnancy it was discovered that Hadley would in fact be born with a CHD; she was expected to have open heart surgery within 3 days of being born. Throughout my pregnancy her heart did not appear to be getting any better...It didn’t get worse however it wasn’t growing and did appear abnormal on all the scans and sonos. At time of birth they had determined Hadley was born with an ASD and to compound the problem her ASD was accompanied with a mitral valve leak and a extremely narrow aortic arch. The left side of her heart was considerably smaller than the right and was causing the right side to work twice as hard. Hadley was born three weeks premature and due to her small size (4lbs 4oz), her cardiologist and surgical team decided it would be best to allow her to “beef” up and grow a little bit before performing the surgery. Approximately 3 weeks after birth being closely monitored in the NICU her diagnosis changed and Hadley’s cardiologist gave us what we thought was the end of our major health scares.. little did we know.. What was thought to be an ASD was determined to be a PFO (Patent Foramen Ovale) which is common and does not always require surgical intervention for repair. It is similar in location to ASD, but its effects on the body are extremely limited. The left side of her heart was no longer smaller than the right side, was not causing the heart to work harder, and her Mitral Valve was Functioning normally. Her cardiology team determined she could be monitored with two outpatient follow ups a year and she would be looking at a normal healthy life with no restrictions on physical activities. Prayers answered!!!
One issue that was prevalent but did not seem to pose any major health risks was that Hadley’s left eye was noticeably more droopy and not opening as wide as her right. Her team of Doctors informed us this is what is called Congenital Ptosis and assured us this was something could be followed up and monitored outside of the NICU; to ensure she did not lose vision in that we were diligent about patching the good eye for four hours every day and frequent ophthalmology visits.
This is where Hadley’s cranial story begins, after cardiology essentially cleared Hadley the next hurdle we needed to get passed was bottle feeding due to her heart concerns we were not allowed to physically breast feed for fear she would burn more calories than taking in. The NICU nurses and team of Doctors decided to perform a “feed study” to see why she was having such a tough time taking to the bottle and not taking a full feeding. After the X-rays and Feed study was taken, it was found by complete mistake that Hadley’s skull was prematurely fusing at the left coronal. A resident med student pointed out to the medical team overseeing Hadley that it did in fact appear that she had premature fusion. Hear her cranial story begins. October 2013 we were in fact diagnosed with craniosynostosis - left coronal fusion. She was monitored outpatient for 10 months, the original Dr. who followed Hadley for the first three months after diagnosis informed us that Helmet therapy would help her possibly avoid surgery altogether.
After two long months of helmet therapy and more research on our end of things we decided to get a second opinion. It was becoming apparent from our research that surgery was in fact unavoidable and helmet therapy would be of no help!! Through networking via other cranial families and research we found the most amazing cranial facial surgeon. In confirmed what we had found independently that helmet therapy in fact had not helped and surgery would absolutely be required. After two follow up appointments and with our new surgeon it was determined that she would be big enough and ready for surgery after 1st birthday. On October 28, 2014 she had her corrective surgery by Dr. Fearon in Dallas. She recovered like the champ she is and we were on our way home Post Op day two. Now that her cranial issues have been resolved, we put our focus and attention on getting her Ptosis diagnosis treated. Due to the lack of muscle and inability to lift her eyelid completely her vision had slowly begin to worsen and the physical appearance of the left eye had begun to droop even further. We consulted with her cranial surgeon who did indicate upon his very first meeting with Hadley that her cranial issue would take priority but that could and would perform her corrective eyelid surgery. January 2016 her eyelid was corrected and once again she proved just how resilient and tough she is. Day one post op and she was back to her normal self, singing “Let it Go”, playing with stickers and asking for Ice Cream. Hadley has rebounded amazingly from her procedures; she is the sweetest child and gives us hope daily.