Help Milo Get the Surgery He Deserves

**Before reading- please be gentle with this information and remember that this is a very sensitive subject and Milo hasn’t grasped the severity of his condition quite yet- so we don’t want anyone to ask him about it or let him know that they know. We are trying to prevent him from having insecurities so we’ve been very careful with how we approach the subject.**

Most of you know about Milo’s story, but for those who don’t- I’m going to finally share it.

When I was 6 weeks pregnant with Milo , I had a miscarriage (or so I thought). I went in for confirmation- only to find out that there WAS a heartbeat and I was so relieved but so confused. I took it easy and remained hopeful- and then around 20 weeks pregnant, we found out that Milo had a singular umbilical artery, intrauterine growth restriction, and was small for gestational age. I began seeing a perinatologist who after reviewing some of my early ultrasound videos and pictures said that he suspected a “vanishing twin” when I told him about my miscarriage scare at the beginning, he told me I had likely miscarried Milo’s twin. (Weird to think of because I was never told I was having twins- and I’m so glad I never knew that was a possibility because it would’ve broken my heart. God alone is responsible for allowing Milo to survive, and we are beyond grateful every single day for that miracle.

As the pregnancy progressed, besides being small- he was healthy on ultrasound and had no serious issues. Fast forward to his birth- he was born a few days shy of 35 weeks weighing 2lbs 15oz- but he was otherwise strong and healthy. When he was barely 24 hours old, I was told that he had a birth defect called “Hypospadias” which is basically a condition in which the urethra isn’t formed correctly and is considered a midline defect. Along with the HS, he also had a secondary defect called “chordee” which is a condition that causes the underside of his penis to be pulled down tight (curved downward) because of the extremely tight, tethered skin. There are many severities, and types of Hypospadia/chordee and it’s actually very common in boys in mild form. Milo’s is severe, which is more rare and much harder to repair. (Not so Fun Fact: HS is also more common in twin pregnancies, intrauterine growth restricted babies, and babies with singular umbilical arteries- all of which Milo was affected by, which is why I took it back to the very beginning.)

Hypospadias is actually more common than spina bifida, Down’s syndrome, and several other “well known” and “talked about” birth defects- but most people have never heard of it until they have a son born with the condition, like myself and my family. If anyone has any specific questions, I’d be glad to answer them to the best of my ability.

Milo’s is an extremely severe case, that we were told would take 2-3 surgeries to correct. So far, he has had 2 procedures- the first one involved placing a skin graft- and it was a failure. His team of urologists at Duke seemed utterly dumbfounded by this- unsure of how it happened and why. They assured me that the second operation would be a success, and although it was an “improvement”, it was not a complete success. We decided to wait on future surgeries until he was over 5 years old to avoid the risk of further issues caused by extensive anesthesia exposure, and he was actually set to have his 3rd repair on December 23rd, but after speaking to his urologist, other parents, and grown men that have had failed surgeries as children- and are struggling majorly with their confidence and mental health because of it- I wasn’t comfortable at all so I cancelled his surgery.

From the beginning, all of my research has led me to the Hypospadias Specialty Center in Texas. They are the best team of Hypospadias surgeons in the US, (Dr Snodgrass and Dr Bush), in fact Dr Snodgrass himself invented and published the most effective and well known surgical technique used all over the world to repair this condition. (I’d known about them since the beginning but thought that since our surgeon used his technique, and was a highly regarded urologist, Milo would be fine having his surgeries done at Duke) Hindsight is 20/20, but now we know that he truly needs someone that deals with these types of cases every day of the week, instead of someone that does (maybe) 1-2 severe cases a year. We have decided that no matter what it takes- we won’t settle for less than the best again- because this will affect Milo’s entire future. Without this procedure Milo will not be able to stand to pee (his urethral opening is at the base of his penis, aka “penoscrotal hypospadias”), and will also never be able to have a child naturally if he wishes in the future if not corrected properly. Not to mention all of the psychological effects he will endure. He has been through so much in his life, and if we keep putting him through surgeries for sub-par results- it’s just going to cause more issues and complications down the road. We HAVE TO get this right.

Here’s the problem: The surgical specialists we need to see do not accept his insurance- so we would have to pay out of pocket. (Around 16-18k per procedure and because Milo’s have both failed, they’ll likely have to start from scratch and do 2-3 (possibly more) procedures in order for him to have the best results (functionally & aesthetically). People travel all over the world to have Dr Snodgrass repair failed procedures done by inexperienced surgeons. Because Milos case is severe- he truly needs the best of the best. We can’t afford to get this wrong. This is going to affect Milo’s entire life- from his confidence,

to basic functionality, and male fertility. It has to be done right- and by someone that we trust fully. There is no other option- we need him to go to the Hypospadias Specialty Center. We were so hesitant to post all of these details- but we decided to put pride aside and ask for help from anyone that knows and loves Milo, and all of the friends and family near and far that have never even met him, but have always been there cheering him on from the very beginning.

In order to go- we have to account for everything which includes procedure costs, travel expenses, time off of work, consultation fees, and hyperbaric oxygen therapy when he comes home to help with achieving the best results post-surgery. Sadly this ends up being an astronomical amount that we just don’t have. Even with excellent credit I haven’t found a loan option that is feasible- otherwise I would have done that and avoided this entirely. I have never in my entire life asked anyone for anything and it’s taking everything in me to type this up….. but it’s not for ME, it’s for my beautiful baby boy and I’ll do ANYTHING for him. If you are unable to donate monetarily, please PRAY for him!!!! Pray for us to find a way to make this happen for him, pray for an amazing outcome, pray for Milo’s future to be full of happiness and that he doesn’t suffer from any long term negative effects of this birth defect. If you have made it this far, and can help in any way, please know that we love and appreciate you beyond words.

Here are some helpful links if you’re curious about this (because it really needs to be talked about more)

This is team of doctors we want to take him to.

https://youtu.be/_0jHcpsQo7M

Please sign this petition to spread awareness and information while you’re here. (It’s free and super quick) (pissed.org)