Our 2 year old son Jude was born with a congenital heart defect called Tertrology of Fallot, which we were NOT aware of before birth. While recovering from emergency open heart surgery to place a shunt the day he was born, CICU doctors noticed he was looking more and more yellow. When they realized it was not the typical newborn jaundice, they were very concerned. A battery of tests were done to figure out the issue. After an eye test and liver biopsy, Alagille Syndrome was clinically diagnosed. A few months later we received the results of the genetic testing that confirmed it. We were devastated. Life hasn’t been easy but we’ve made it work despite all the obstacles! Jude recently had his second open heart surgery to replace a shunt and he is due for full repair as soon as his pulmonary arteries are bigger. His liver is still considered stable but slowly getting worse. His GI doctor says he will most likely need a transplant in the future. He has a small cyst on his kidney that thankfully hasn’t given him any trouble. He is doing well in therapies and meeting milestones! We are taking his journey one day at a time, one symptom at a time. If I can share a nugget of wisdom for new parents of children with Alagille Syndrome, it’s to make sure you have a good support system. -Nicole Neal (Mom)
Most people will not understand the struggles we parents go through. You HAVE to find some close friends/family that you can share all the ups and downs with. Look–even Jesus had a small group of guys; Peter, James and John, that he confided the most in. OR if you prefer, EVEN Batman had the Justice League! You must do this too. Your child’s journey is not a journey you have to travel alone. Get involved in a church, a support group or something that can help you meet people who will understand, will truly listen, and will encourage you. –Jeremy (Dad)
When our son was born, my husband was a part of a fantasy football league at our church that started right before his birth. While in the hospital after Jude’s surgery, he needed someone that He could vent to or even talk about something ELSE during the downtime at the hospital. This group of 10 people knew that, and were there for him each night to chat about Jude, but also help him get his mind off of that chaos all around him. He will always love this group of people for what they did for for during this time. I ALSO had a group of ladies whom I reached out to for encouragement. I can’t thank them enough for speaking life into me!
Remember to take care of yourself because you cannot pour from an empty cup! This goes for you too Dads (or male caretakers)! My husband is an admin for a mens only Facebook page called The ALGS Mans cave. We have many places for women to get support but we’re in dire need of a place for men to share their own feelings and are hoping this will help.
I know my husband works so very hard to provide everything he can for his family. If you know a Dad who could use a pick me up or just a “Hey man..you’re doing a great job-DO NOT hesitate. Make the phone call…stop in and see if HE needs anything. These guys are just as tired as we are. I would just like to say thank you to MY children’s Daddy and thank you to ALL the ALGS Dads or male caregivers out there! You guys are rocking it!
We will keep bringing awareness, hope and pray that new medications and treatments are found that help alleviate things like the itching, xanthomas and help with weight gain. This isn’t an easy road to travel but one look at Jude and we know it is definitely worth it! Being a ALGS parent has taught me NEVER to take ANYTHING for granted and ALWAYS appreciate the victories no matter how small! It has also taught me how to be ok with reaching out to others for help and how important is to BE helped. –Nicole (Mom)
It is also VERY important to incorporate other siblings into the care of the child with ALGS. It’s been pretty rough on our daughter Audrie. She was the only child living in the house before Jude’s birth and just like her father, loves the spotlight. This has been a difficult change for her as Jude gets much attention because of his issues. It’s been tough on our other daughters, Gabi & Zoe, who live out of town. They do not get to see him very much. In our opinion, we as parents must push to have as much time with any other kids in the home as we can. We do feel guilty because of the extra time spent with the one with special needs, this is human nature, but we cannot let that guilt stop us from making a change. Though we might think shielding them from the truth is good for them, all that might do is put a wedge of resentment between them and the one with needs. We try to be honest with Audrie and she understands as much as a 5 year old can. We let her help us and soon will be taking her with us on doctor visits to learn more. She doesn’t really understand just yet, but she is going to be one of the most important people in Jude’s life. She will have to stand in for us at school and outside the home, so she must know everything that goes along with it, and most importantly, she must feel like she’s part of the the team. –Jeremy (Dad)
We all know the struggle that comes from having a child with this disease, but that struggle must not define us nor control us. Our children are a special gift and we must strive to share the story of that gift with others. Jude’s journey will not stop with Alagille but will only be a starting point in his testimony that will reach many. — Nicole & Jeremy ALGS Parents