Baby Wylder Lee’s Medical Expenses

My nephew, Wylder Lee Jacobson, was born on February 19th, 2022 with a rare genetic disorder. He came into this world without a cry or breath and now he’s fighting every day to get stronger and go home.

Wylder has what the doctors are calling a “translocation of chromosomes” – specifically, his 2nd and 16th chromosomes are unbalanced. This is such a rare disorder that it is sometimes referred to as SWAN which stands for a “syndrome without a name” which can cover a variety of physical issues.

So what does this mean for our little warrior? For Wylder, this means he currently has the use of one vocal cord instead of two. He has yet to be able to cry. This also means his mommy and daddy have only ever heard him “coo” just a few times. His cries have tears but there is no sound. It’s heartbreaking to witness. One of the procedures he has coming up will be another scope of his throat to determine if this is permanent or temporary.

This disorder also affects his facial muscles so, in addition to not making noise, he struggles to open his eyes and eat on his own. With the help of kinesis tape, his parents were finally able to see his beautiful blue eyes for the first time last week. What a miracle! There’s also an eyelid surgery that could aid in helping it be easier to open his eyes.

However, due to the CO2 in his lungs, he has to be on 6 liters of oxygen to push it out (we need him at .5 liters to take him off and bring him home). Due to this, Wylder has since needed to be intubated to help get the CO2 down and more oxygen into his lungs. While this was being done the doctors discovered that Wylder’s tongue is further back and falling into his throat. This opens now the possibility of jaw surgery which will be invasive. However, if done, he could possibly avoid trachea surgery.

In addition to the jaw, trachea surgery and eyelid surgery, baby Wylder will likely need a G-Tube put in to eliminate any issues he may have swallowing and gaining weight without the feeding tube down his throat. We are hopeful that the G-Tube and trachea tube won’t be permanent for him. Once they get him home they will work on strengthening exercises to get his lungs and throat stronger. He has also been on a feeding tube since birth. He’s been steadily gaining weight which is amazing!

The doctors will also do another echo of his heart to check to see if the ASD (atrial septal defect) hole in his heart is getting smaller and to check on swelling. The right side of his heart is enlarged because his lungs are working so hard. This is called “pulmonary hypertension”.

Everything is linked to his breathing and we really need to wait and see if he can even handle his upcoming surgeries. If he has an infection or his heart is still working too hard they will push it back. However, he really needs these.

Baby Wylder has been in the NICU now for 40 days and these surgeries are just the beginning. He has an army of the best medical doctors taking care of him. He has a cardiologist, neurologist, orthopedic surgeon (he has scoliosis), ENT, ophthalmologist, a nephrologist (he only has one kidney), and now a plastic surgeon. He also has a physical therapist, occupational therapist, speech therapist and Genetics doctor. Their bills will all come separately from the hospital bill.

The financial burden my sister and her partner, Tyler, are bound to face will be immense. Through everything though, they have been absolutely incredible. They spend hours every day by his side playing with his beautiful hair and reading him books. They want nothing more than to bring their baby boy home. These surgeries and procedures will help him get there. If you’re unable to donate funds please continue to send prayers and healing energies – We need all we can get. Thank you. xo