June 17 - Dear Nicholas Sparks (Guest Blogger Christy Phares)

Dear Mr. Sparks,

This is the story about Jonah Michael, who has shown us how valuable life is and what a blessing a child can be. Jonah was born with a birth defect known as congenital diaphragmatic hernia which is simply a hole in the diaphragm. The diaphragm begins to develop during the 8th week of pregnancy. Jonah’s diaphragmatic hernia was not easily diagnosed during my pregnancy, although my OB/GYN physician did determine during a routine ultrasound that something was wrong with Jonah’s development due to not seeing his stomach, which should have been easily seen during this 18th week.

My physician referred me to a specialist, a neonatologist at the Charleston Area Medical Center (CMAC) in Charleston, West Virginia. Upon my first visit with the neonatologist, it was discovered that Jonah had a bronchopulmonary sequestration on his left lung. So, on a subsequent visit to my neonatologist, he was monitoring Jonah’s sequestration to see if it was in proportion to his body growth. Each visit we were reassured that everything was in order with Jonah’s growth and that the sequestration had not increased or decreased in size.

Due to my husband graduating from medical school in May 2000 and starting his Family Medicine residency program in June 2000, my prenatal care was transferred to Washington, PA. Before our move, my initial OB/GYN scheduled me an appointment with a maternal/fetal specialist at the Physician’s Office Center in Morgantown, WV near our home in Washington. There I had several ultrasounds with my sister by my side. I was blessed to have her there provided she is OB/GYN physician and intensely watched my ultrasounds and even performed one on me herself. She spent the time showing me parts of the ultrasound that were alarming. The stomach was still not present at this time. Possible diagnoses from observing the ultrasound were: bronchopulmonary sequestration, congenital cystic adenomatoid malformation (C-CAM), splenic cyst, and diaphragmatic hernia. Ultrasounds were not conclusive; therefore, a fetal MRI was scheduled.

The day of my fetal MRI, I was so nervous. I knew I would have to lie down inside an empty tube and claustrophobia began to foster inside me. It was a little scary, but somehow I managed to get through it. My films from the MRI would be looked at by a pediatric surgeon and an appointment was already set up for 2 days later. The day of my appointment I met the pediatric surgeon and he had not even looked at my films. So, needless to say, my appointment that day was useless. He knew nothing about my case. I was really upset that day after the appointment and when I told my husband, he was fuming. We did not think I should have gone to a scheduled appointment to learn nothing about Our Little One, Jonah Michael. A day later, my husband was on the phone trying to get in touch with the pediatric surgeon. And finally the surgeon called back and gave us the results of his findings. Jonah had a left-sided diaphragmatic hernia which was allowing his abdominal cavity to go into his chest cavity. This is why the doctors could not see the stomach.

Due to Jonah having a diaphragmatic hernia, he would have to have surgery to close his diaphragm. This surgery was to be performed by the pediatric surgeon sometime after Jonah had been stabilized. Our plan was to have this done in Morgantown where both of our families lived; however, we learned that this hospital did not have a machine known as ECMO (extracorporeal membrane oxygenation). We felt Jonah may need this machine after delivery or surgery and so, we chose to go to a hospital which had this machine. We transferred all my records to the high risk ob clinic at Magee-Women’s Hospital in Pittsburgh, PA. and we changed our course to having my delivery at Magee-Women’s and then having Jonah stay at the NICU in Children’s Hospital of Pittsburgh, where the ECMO machine was available.

We, as parents, were to prepare ourselves for a NICU stay after delivering our little boy. Jonah would be delivered, incubated, and sent to NICU after stabilization. Since my husband did not have flexibility of getting time off from his residency program and this delivery was a crucial time in which he would want to be there, an induction was scheduled for Monday, August 7th, 2000.

I labored for two days starting from the morning of August 7th. We wanted to try to deliver Jonah VBAC instead of having a repeat c-section. First day I only dilated to 2cm, so they decided to take me off pitocin and let me sleep through the night without contractions! I started on Tuesday at 5:00 am with pitocin and cervical gel in hopes of making my contractions stronger and labor faster. My labor did go faster and by the end of the day I had progressed to 9 cm. However, it was at 9 cm I stayed. After 4+ hours I progressed no longer. It was at this time that my OB said we should strongly consider a repeat C-Section. And so we did. I went into the operating room approximately 2:30 am, and delivered Jonah Michael Phares at 4:20 am. Jonah weighed in at 8 pounds, 3 ounces.

As Jonah was taken from the room, I was being sewn back together. After surgery I was taken back to my L&D room waiting to see Jonah one last time before he would be transferred to Children’s Hospital. They brought Jonah in an incubator which scared me as I wasn’t prepared to see him in it. Bob and I said hello to Jonah and told him to be good for the nurses. As I recovered in a private room, Bob rested awhile and then got ready to go over to Children’s Hospital to check on Jonah. I didn’t like being in a different hospital than Jonah, but that’s the way it had to be. Bob told me how beautiful Jonah was and how healthy he looked. In fact, Jonah did so well that day, the pediatric surgical team decided to perform Jonah’s surgery as an "add-on" the next day, Thursday, August 10th.

Jonah had surgery on Thursday at 2:15pm. His hole was as large as a half dollar and he had 3 sutures to close it. When surgery was performed, the stomach was not above the diaphragm, rather the colon (large intestine) and the bowel (small intestine) were. The stomach, spleen and liver were all in normal positions. Before closing Jonah’s incision, the doctors observed another interesting finding, which they removed and sent to pathology. Weeks later we were informed that the finding was a foregut duplication with gastric and lung tissue. We are unsure if this is related to his primary birth defect.

Jonah stayed in the NICU for 4 days and in the Observation Room/10 South for 2 days. He spent the night with his mommy in a private room on Monday, August 14th and came home on Tuesday, August 15th. This is a day we shall never forget. Jonah was a mild case of diaphragmatic hernia; however, the doctors could not determine the severity of his hernia until they actually started operating. The doctors called Jonah a miracle and superstar patient. They were so proud of his accomplishments in such a short amount of time! The doctors were leery about letting Jonah go home so early, but there was not a good reason to keep him there for his birth weight was fine, his stats were wonderful, and his feeding was terrific. Since the doctors were hesitant to let Jonah leave, they felt they had to give him/us something ‘just in case’. So, Jonah left with an Apnea monitor to wear at night or at our discretion. We took the monitor, he wore it once, and never used it again. Bob and I did not think he needed it.

Jonah currently is doing everything little babies do. We are enjoying his energy. He kicks all the time. He loves to talk to us and smile. And we know his lungs work well for he cries loud when he needs us! Jonah’s incision is healing well and is getting flatter each day. We massage his incision every day to help the tissue to heal well. We feel blessed to have such a wonderful little boy who began his life on such a bumpy road. We are eternally grateful that God has brought us Our Little *Superstar*, Jonah Michael, into our lives.

Written by Jonah’s mom, Christy Phares (2001, West Virginia)