Prebirth Story: Pregancy and Diagnosis of CDH

Justin’s Journey began at the end of July 2012 when shortly after Jess and I found out we were pregnant (Monday aug 13th). We were elated with joy at the thought of having another baby and a sibling for our Andy man. Other than a little more morning sickness than her previous pregnancy everything seemed to be going normal.

We could hardly wait for our 18 week ultrasound when we would find out if we were having a boy or a girl. Our appointment was the day before Thanksgiving and we planned on sharing our news with our families on the holiday. It’s a Boy! the technician told (and showed us) as she worked her way through the normal scanning and measurements. Then she was quiet for a while as she studied the ultrasound images and then finally said she was having a hard time getting a good picture due to the baby’s position. She asked Jess to lay on her side to see if the baby would turn and that she would be back in a few minutes. When she returned she brought in a doctor who took over the ultra sound. After a few minutes of scanning she explained to us that she believed that the baby has what is called a CDH (Congenital Diaphragmatic Hernia). During his development earlier in the pregnancy, the diaphragm didn’t develop properly and as a result there is a hole/tear which has allowed his stomach & intestines to gravitate into the chest cavity on the left side. These organs were crowding the room for his lung to develop on that side and also pushing his heart off to the right side. It was recommended that we seek a second opinion at the University of Michigan and continue prenatal visits there. (see below web links for more information of CDH)

18 Week Ultrasound

18 Week Ultrasound

We were shocked and scared as it was also explained to us that this could be a life threatening condition for the baby. We immediately made an appointment with the fetal diagnostics department at U of M. We were hoping and praying that the condition was mis-diagnosed due to the small size of the baby. The next week we made our first trip to U of M and after an ultrasound and a pointed but very compassionate talk with a high risk OB doctor the diagnosis was confirmed. We were crushed and overwhelmed, possibly more than when first found out. It wasn’t a mistake, our baby has a life threatening condition and may have permanent disabilities if he even survives birth.

From November through February we made day-long trips to U of M every 3-4 weeks to meet with medical professionals and seek as much information as possible regarding this disorder. We had ultrasounds in the beginning until Justin grew larger for the MRI and Fetal Echocardiogram. We also met with OBs to see how this would affect Jess’ care and the impact on her body. The Echo showed that his heart was functioning well and that more Echo’s would be done after birth. The MRI showed in much more detail the intestines, stomach and a small portion of the liver in the left side of the chest. There was lung on the right side, but it was difficult to see if there were lung on the left side. A pediatric surgeon shared the results of the MRI with us and said Justin’s case was moderate-severe. They have seen better and worse and we wouldn’t know the exactly where Justin fell until after birth. He explained that the surgery to repair the hernia was not the problem. It’s a very routine procedure. The issue is getting his lungs and heart stable enough prior to the surgery so he has the strength to survive the surgery. There are concerns such as pulmonary hypertension, among other things that need to be addressed prior to surgery.

We were told to expect at least a 2 month recovery after the surgery. But it could be as long as 4+ months depending on the severity and recovery time. We knew without thought that we wanted to be with him in Ann Arbor so we started to research living arrangements in Ann Arbor and settled on an extended stay hotel. Our move in date was set at April 1, 2.5 weeks prior to the due date.

As parents this was obviously a very large burden to carry. We decided to not publically share this information outside of very close family and friends. We had a very prayerful, supportive, and compassionate support group but needed the rest of our lives to have a certain amount of normalcy. As time passed God gave us a peace that allowed us to function as we acknowledged the situation was in His hands. We focused on what we could control: learing as much as we could so we could be mentally prepared for what was to come and preparing our family (including our pets) for our move to Ann Arbor.

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