MJ's Story

After almost a year and a half and two rounds of the fertility medicine chlomid, my husband Willie and I were absolutely elated when we found out we were expecting. My pregnancy started out just like any other, with the all day morning sickness and nervousness of a first time mother-to-be. We found out I was pregnant the beginning of December, and by the beginning of January, I had started spotting. I was petrified that I was having a miscarriage, and our doctor wanted us to come in and do an ultrasound to see what was going on.

We got the surprise of our life when we found out that not only were we having one baby, but there were two tiny babies growing in my belly! Willie and I were in shock, and could hardly speak we were so surprised. We spent the next few weeks overjoyed and eagerly anticipated when we would find out what we were having. When I was 17 weeks pregnant, we had an ultrasound and both of our babies 'showed us the good's'. We were having two boys! And the doctor was pretty sure we were having identical twins! Two baby boys, we could just not be happier!

Four weeks later, we went in for another routine ultrasound. We got another shock that day, but not a good one. One of our babies looked to have a condition called CDH, or congenital diaphragmatic hernia, but they weren't sure, so we would have to go to a specialist to confirm the diagnosis. CDH occurs when the diaphragm does not fully form, which allows the stomach organs into the chest cavity. This severely hinders heart and lung development. Two weeks later we were devastated when we were told that yes in deed Baby Boy B would have CDH. At this point we had decided to name our boys William Glen Skaggs IV and Michael Joseph Skaggs. We decided that our baby with CDH would be called Michael Joseph and we would call him MJ for short. At the time we had no clue what we would be in store for once our twins were born. It never crossed our minds that we would not bring both of our baby boys home with us. We knew the statistics: only 50% of CDH babies live, still we knew, just knew, that our son would be the odds and live. 

After numerous doctor appointments and specialists and ultrasounds and MRI's and everything else that needs to be done for a CDH baby in utero, all We could do was wait. I developed preclampsia at 34 weeks and was admitted into the hospital. I was put on bedrest with the goal of making it to 37 weeks, and my boys would induced. Well, two weeks later, at 36 weeks my water broke and I was in labor! I was overjoyed to finally see my boys! After 26 hours of labor and two hours of pushing, I was no where near being able to push the boys out. So I had a c-section, and William Glen was born at 3:26 am and Michael Joseph was born at 3:27 am on July 25, 2009.

MJ just after birth, the doctors and nurses were stabilizing him.

After my c-section I was unable to see MJ until 10 pm that evening. My son couldn't have looked more beautiful. However, he was very sick and we were very scared for him. After two days at the University of Kansas Medical Center, he was not showing any signs of improvement. Children's Mercy Hospital has a machine called ECMO, which is a heart and lung bypass. Since KU did not have this machine, and Children's did, MJ needed to be transferred to Children's. Watching him move was the scariest day of my life at that point. It took two hours and five nurses to move him from the life support machines at KU Med to the transport life support machines that Children's Mercy had for him. With each machine switch, his stats would plummet and then balance out again after time.

The first time I saw my son. 

The next day I was released from KU along with MJ's twin, Will. We rushed straight over to Children's and saw MJ. He looked much better at Children's and we got to bring Will in to see him everyday, which was a life saver. It broke my heart thinking that my boys would be seperated, but Children's made exceptions for twins and Will was allowed in to see MJ everyday.

MJ at Children's Mercy Hospital

When MJ was six days old, he was placed on the ECMO machine. He was very ill and was unable to get off the ECMO machine and had his repair surgery on ECMO. After his surgery, MJ had a very rough few days. We thought we were going to lose him. But MJ pulled through and started to get better. When he was 31 days old, after 25 days on ECMO, MJ was strong enough to come off of the machine. Again, he had a rough few days, but on my birthday, August 28, he started to make a turn and really do well. At 4 pm that day, something happened and the doctors still don't know what.

Our family of four, complete for the first and last time. 

We didn't leave the hospital that day and stayed by his side overnight. The next morning he was doing worse, if he even could have. Throughout the day the doctors did everything in their power to keep MJ alive. But then there was nothing else left to do. We made the choice to hold our son and let him know that we loved him in his final moments. The first time we held our son was the last. But we had three amazing hours holding MJ and Will together before he passed away in my arms.  August 29, 2009 was the first time our family of four was together and we had to say good bye. MJ is gone, but he will never be forgotten. Thirty five days was not nearly enough, but he will remain in our hearts forever.

Saying Good-Bye.