Baby Verhagen

Update Nov 9, 2023:

Sister Sherin: My brother Joe and his family unfortunately have to move to get their daughter closer to specialists and due to the severity of their daughter's rare condition they've had to live out of state which has prevented them from working their jobs. It looks like they may have opportunities lining up for them but in the meantime a donation to their family could be a great help and early Christmas present for them We are all so grateful for all of the people who have helped them so far on this long journey they have ahead to help their baby girl.

Update October 29, 2023:

Okay so here’s another update about our sweet little girl. If you have questions please PM me about them so that the comments don’t get overwhelming. I’m also attaching two songs in the comments that have been comforting to Laura and I through everything.

On Wednesday [baby V] was diagnosed with a type of connective tissue disorder called Loeys-Dietz syndrome type II. No matter the type, severity and the way it manifests can vary widely in each individual. This was a spontaneous occurrence at conception and not inherited. Unfortunately in her case they have found that the risk of aortic aneurysms and aortic dissection can be higher in individuals with type II but they are common in all types. Although aortic aneurysms are the most common location in people with this, aneurysms can occur throughout the body so regular scanning and monitoring is required throughout life. In the occurrence of aortic aneurysms and dissections open heart surgery is required and some individuals may require multiple heart surgeries in their life and some people require dozens of other surgeries depending on how this affects other parts of the body. The concerns with connective tissues can cause a variety of symptoms including, hernias, lung issues, joint pain, contractures, and scoliosis. Typically there is a lot of monitoring and therapy required for individuals with this condition and it can even cause a certain look in facial features and in their joints etc. We are still learning more and processing this information. This is a fairly new and rare condition.

We are grateful to have such an early diagnosis as a lot of people don't find out until well into childhood or adulthood. We are also grateful to have a diagnosis that explains her many health concerns and we can do our best to get her the care that she needs. We are facing a lot of uncertainty for her future but we are praying and hoping for the best outcomes and life for her. She is such a strong little soul. We feel strongly that she knew about this before she came here and I believe she chose us to be her parents to help her through this. We're feeling better about the fact that we didn't pass this on to her and there is less than a 1% chance that any of our future kids will have this. It's just also sad that her future kids will have a 50% chance of getting what she has. It's hard realizing that this isn't just a regular thing that can be resolved or be over with just a surgery or something like we were hoping. This is our new life figuring this out as it presents itself. Thanks so much everyone for your amazing faith and support through all of this with us! We still don’t know when she’ll be released as they’re wanting to learn more about her specific syndrome.

Update from Joe 8/30/23:

Her first surgery went well and has definitely helped her heavy breathing, but there are other factors along with the VSD that still are keeping her breathing Labored enough that she is still on high flow respiratory support until they find more ways to clear up her lungs. Been a lot of testing and waiting. We had a feeling that this first surgery wouldn’t be the silver bullet until she’s big enough for the next surgery. But there are some steady improvements so time will tell I guess. Thank you to everyone for their love and support through all of this!

Update from Joe 8/24/23:

So the update is that she’s hooked up to a bunch of monitors and things but her fluid levels in her lungs are way way down now so she’s breathing easier and they have her on oxygen so that’s helping too. She unfortunately picked up a cold (rino virus) at some point and so they’re now delaying fixing the PDA until next week when she’s had time to get that out of her system. From there they’ll keep an eye on her and we’ll have her out of the hospital until she’s 3-4 months at which time they’ll want her back in for the VSD and ASD surgery. Poor little girl is not very comfortable it seems. It’s hard to hold her too because she has so many cords on her. Anyhow glad we’re all here now and that they’re helping her!

Original Post:

[Baby V], daughter of Joe and Laura, was born mid-July with some known and unknown health complications at the time. She has been in and out of doctors appointments and told to monitor her progress. About a week ago, her breathing took a turn for the worst. After taking her into the emergency room, and a week in the Fairbanks, Ak hospital, it was discovered she has some serious heart problems and [baby V] was in heart failure with fluid in the lungs. They discovered several holes in the heart and was medivac from Fairbanks, Alaska to Primary Children’s in Utah where she can receive the medical care she needs.

[Baby V] will receive an initial surgery to repair one of the defects and then a second surgery in the months to follow.

This gofundme is being set up by family to help them with loss of income between the next 3-5 months for bills at home as well as travel and living expenses while away. Please keep baby V, Joe, Laura, and little brother in your thoughts and prayers as they navigate these next several months. We appreciate all those who have already been praying and reached out to help and serve them!

From Joe: Well sometimes your world gets turned upside down and all your plans go on hold but in the last week I’ve seen so many miracles and so much charity, love and selfless service that it’s been truly humbling. Our sweet little [baby] (5 weeks old) has some serious heart issues and after several days in the hospital in Fairbanks she was life flighted with Laura to SLC last night where she can get surgery while having the support of a lot of family and friends down there. Getting her there was a huge answer to so many prayers and fasting and we just feel so grateful for everyone who has baby sat for [little brother] and visited us in the hospital and helped us get our flights covered and provided meals etc. I really feel like everything is going to work out good for her but it has sure been scary and difficult along the way! We’ve still got a long road ahead with this but I know God has his hand in this!