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~Lane Hauber~ Full Trisomy 18 12/08/2008

I went in to deliver my son on a beautiful December day in 2008. The pregnancy went smooth, although I had a few abnormalities. I was tired the whole time, I never looked very pregnant, and I had to take several stress tests towards the end. I was reassured everything was fine with my son although he would be a little small. I delivered Lane vaginally and when my husband went to cut the cord, my OB/GYN shook his head and quickly rushed Lane over to a bassinet. I hadn't heard a cry...then people started rushing in to help Lane breath. While they were working on him, I remember asking my husband what was wrong...he moved himself between me and Lane, and just kept saying, "everything is going to be ok". Finally, Lane was stable and within hours they were transporting him to the nearest children's hospital. He was very small, his head was an odd shape, his hands were clenched and so they had suspicions of a chromosome abnormality. I discharged myself from the hospital less than 24 hours after giving birth because I needed to be near my baby. I was scared, confused, overwhelmed...my world was crashing down around me and it was because something was wrong with my baby and I didn't know how to help him. The first couple of days in NICU, Lane was not stable...he was having apnea episodes. The specialists were running all kinds of tests, and we were just trying to make sense of what was going on. The Pediatric Cardiologist talked to us, saying that Lane has a VSD and an ASD. However, it was a routine surgery and they wouldn't have any problems repairing Lane's heart condition. Then...at 3 days old, MY WORLD TRULY CRASHED! We walked into the area where they were caring for Lane, and we noticed a DNR attached to his crib. The nurse immediately brought the doctor in, and that's when he said the words, "Lane's FISH test results confirmed a full Trisomy 18 diagnosis". We asked why he had a DNR and the doctor told us that babies with this diagnosis won't live long, maybe a few days to a month at the most. We told the doctor that we didn't appreciate him putting a DNR on our baby without speaking to us first or getting our permission. He told us he didn't have to get our permission. Then we were told that they wouldn't be performing heart surgery on Lane...there wasn't anything more the hospital could do for our son.

At 9 days old, we took Lane home on hospice. He was remaining stable and I wanted him to be at home in our arms when he passed away. Within a couple of days, I had the hospice chaplain come out to the house to baptize Lane...a memory I will cherish forever! Then Lane started having more and more apnea episodes, sometimes he would snap out of it on his own and a few times he required CPR. (I've since learned that a common treatment for apnea in preemies is caffeine therapy) The apnea episodes lasted until he was a month and a half old and hasn't had one since. At two months old, we took Lane in for a cardiac appointment and asked if they would reconsider heart surgery since Lane was getting stronger and stable...again, he was refused. However, we were able to get him in to get a g-tube. At the time, Lane was pulling his ng-tube out daily and we had to do something about it. The surgery went smooth even though the doctors kept trying to get us to change our mind. They said he would never come off the breathing machine...Lane came off immediately.

At 6 months old, we took Lane to another children's hospital to get a second opinion on heart surgery. We were told by the surgeon that if Lane lived to be a year old, then they would perform a heart cath. to see if he would qualify for heart surgery. We waited...and during this time Lane was taken off hospice at 10 months old because he was doing too well for the hospice services.

At a year old, we took Lane back to hospital. They performed a heart cath and the results came back that Lane's pulmonary hypertension was too high and they couldn't risk doing the surgery on him. I can still hear the surgeon's words, "If you ask me to perform heart surgery on Lane, then you would be asking me to assassinate him." However, the doctor that performed the heart cath. suggested that we put Lane on Sildenafil (a liquid form of Viagra) to help with Lane's pulmonary hypertension.

Then...we find out that Lane's going to be a BIG BROTHER! We were still having issues with Lane vomiting, it seemed like anything would set it off. I was worried because I kept getting bigger and was afraid I wouldn't be able to help in time...I was afraid he would aspirate. So...after months and months of trying different reflux medications, I convinced the GI doctor to get Lane a nissen fundoplication. The nissen fundoplication would keep Lane from being able to vomit, so this seemed like the perfect solution. The surgery went smooth, however, 12 hours after surgery Lane started to swell, he hadn't urinated since before surgery, and when he got another dose of Dialaudid...it caused him to CODE. They were able to revive him, he went to PICU on a vent, and during the first night he got a fever of 103.9. He was fighting for his life. While Lane was fighting, I asked to read the book about prescription drugs, and from what I read...Lane never should have been given Dialaudid. It's not recommended for pediatric patients with heart and lung issues. Well, 4 days later, Lane was off the vent and we headed home again.

Lane has continued getting stronger and stronger. He has learned how to hold his head up over-time, he can now sit up by himself, he can roll over on the floor, and he can sit himself up in his crib from a lying position. Lane receives physical, occupational, and speech therapies at our home. At the age of 3, he graduated from ECI and officially become a student. We decided to have Lane home-schooled for right now because it's just so easy for him to pick up the awful germs with his lower immune system. Aside from his 3 surgeries (g-tube, nissen fundoplication, and ear tubes) and a few hospital admissions for respiratory viruses, Lane has remained stable and has fought illness quickly.

Recently, I have changed most of Lane’s medical team. I felt like I was dead-locked and I couldn’t get any of them to get him the appropriate medical care. I found a pro-life pediatrician (pro-life meaning the doctor sees all life as valuable and precious) and he has been great with Lane! We found a new ENT specialist that put tubes in Lane’s ears in July of 2012. And…we found a new Cardiologist that helped us find a doctor that could help Lane with lowering his pulmonary hypertension (He is now on a medication called Tracleer (Bosentan). If we can get it lowered, then we also found a surgeon that has performed heart surgeries on other t18 and t13 children and he’s willing to help Lane too.

Lane is now 4 years old and he's fighting the good fight! We are so proud of our little boy and he has taught us how to be better parents and advocates!

I also have a blog that I share our Trisomy 18 journey on
http://lanesedwardssyndromejourney.blogspot.com/ and here is my youtube channel for Lane with awesome videos of him and also awareness videos I've made for the Trisomy community http://www.youtube.com/user/alihauber?feature=mhee
Also, here is a link to the Channel 8 news program about Lane http://www.wfaa.com/home/related/Parents-fight-for-sons-medical-rights-138485294.html and here is a beautiful article my husband wrote for lifesitenews http://www.lifesitenews.com/news/trisomy-18-bella-santorum-and-the-truth-about-miracles

Alisha Hauber

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