DiMaria, Sydney

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My husband and I planned for a long time to have a baby. Finally, when the time came, we were very lucky to conceive right away. We were so excited! I loved being pregnant and I felt great. My husband laid his head on my belly every night to listen to the baby and to feel the baby kick.

I went to my obstetrician regularly and passed every test with flying colors. We had an ultrasound at 20 weeks and everything was fine. We found out we were having a girl! We began decorating her room, picking out baby things, and reading baby name books. We were having so much fun; we couldn’t wait to meet our daughter!

At 29 weeks, while still feeling fine, I awoke one morning bleeding. We went to Saint Peter’s University Hospital in New Brunswick, NJ. After being examined, it was determined that I was in pre-term labor for some unknown reason. Since the baby appeared fine, they decided to stop the contractions. I was released the next day, on medication and bed rest. For the next 7 weeks I visited my doctor once a week and each time everything was fine. At 36 weeks I was taken off the medication. I began cramping and spotting immediately, with the severity increasing slowly and steadily over the next week.

At 37 weeks, I returned to the hospital in full labor. I was given an epidural and six hours later we had our baby! Sydney Lynn was born on Tuesday, February 15, 2000 at 6:33 p.m. She weighed 6 pounds, 6 ounces, and was 19 ¼ inches long. It was the most amazing moment of our entire lives. Experiencing her birth was truly a miracle.

As soon as she came out, the doctor placed her on my belly. She was so beautiful! My husband took her picture and cut the cord. She looked so perfect; nobody had any idea something could be so wrong. But Sydney wasn’t crying. The nurse took Sydney to the bassinet next to my bed. She tried rubbing her to stimulate her to cry, but nothing. Then she tried giving her oxygen, and still nothing. The doctor and nurse looked at one another, and the nurse pressed a button on the wall. Within seconds the room flooded with doctors and they all gathered around Sydney. They worked on her for a moment, then bagged her and wheeled her away, with my husband in tow. I stayed in the delivery room, empty, alone, and terrified.

Within an hour my husband was back. The doctors thought maybe Sydney had either an infection or fluid in her lungs. Neither sounded too serious to me, but I still couldn’t understand why any of this was happening. We were supposed to have a healthy baby. Nothing like this has ever happened to anyone in our families before.

Next I was taken to a private room and my husband went back to the NICU to be with Sydney. This time when he returned, I took one look at his face and immediately knew there was something seriously wrong. He was completely pale and on the verge of bursting into tears. He explained that the baby had a diaphragmatic hernia. Her intestines were up in her chest, her heart was pushed all the way over to the right, and her lungs were not developed. I was crying hysterically. I wanted my baby back. I didn’t believe what they were saying. How could I have done this to her?

They worked on Sydney all night. She kept crashing and they kept working. They took turns and they took breaks and finally at some point she stabilized. Later that same night I went to see her. She was a complete mass of machines and wires. She had tubes everywhere and monitors all over her. There wasn’t one inch of my little baby visible. I died looking at her. I wasn’t allowed to touch her. They handed me Polaroids.

I stayed up that whole night and cried. I was terrified every minute that someone would come into my room and tell me Sydney didn’t make it. Nobody did. The person that finally came was my husband. It was morning and he returned from the NICU to tell me the doctors thought they could operate and possibly save Sydney. They weren’t sure if her lungs would inflate, but at least it was worth a try. She had a 50% chance to live.

Sydney remained critical but stable. We stayed at her bedside every possible second. We wiped whatever skin we could reach with gauze and put baby lotion on her. We combed her hair and sang to her. We changed her diapers. Her nurses helped us and encouraged us. They were her angels: Peggy, Angie, Amelia, Jessica, Debbie.

On Friday, when she was three days old, Sydney had her operation. The whole process from start to finish lasted three hours. Her surgeon, Dr. Steven Palder, closed her diaphragm with sutures, but her intestines had grown too big for her body. A Gore-Tex patch was sewn into her abdominal wall to give her more room. She came out of surgery with more tubes than when she went in.
Thankfully, the weekend proved to be uneventful. On Monday, they removed one chest tube, one foot IV, and her arterial IV’s. On Tuesday, they extubated her, removed the other foot IV, and took out her nose tube. It was the first time we saw her face. They began to bottle-feed her my expressed breast milk. Wednesday they removed the other chest tube, her hand IV’s, and her staples. We were finally able to hold her. On Thursday they watched her eat, pee, and poop, and on Friday we took her home. She was ten days old. Everyone called her the Miracle Baby.

The first few weeks at home were a little scary. We were new parents, with a baby that just had surgery. It was flu season, so she wasn’t allowed out of the house and we couldn’t have visitors. She never did learn to nurse, so I continued to pump my milk for her. We had to keep going back to the hospital for weight checks, blood tests, x-rays, and hearing tests. She did fine through it all.

She is now 3 ½ months old and perfectly healthy. She sleeps through the night and eats well. She is more than double her birth weight. She loves ceiling fans and her daddy. She is always smiling and laughing. She recently discovered her hands, and discovered that the best place for them is in her mouth. She just started trying to roll over. I am still trying to sort out in my mind everything that’s happened. I pray every night that my baby wakes up in the morning, and every morning I give thanks for another day with her in my life. My biggest concern at the moment is that the Gore-Tex patch in her abdominal wall may have to be removed, which is another major surgery. Hopefully, if it doesn’t bother her, she will be able to keep it forever.

The CHERUBS web site and the friends I’ve made there have been a great source of comfort and information for me. I’ve written this story for Sydney, and to help other parents about to embark on the most challenging journey of their lives. Sydney was very lucky; I realize that many others are not. I hope that someday a cause and a cure can be found for Congenital Diaphragmatic Hernia so that no baby ever has to suffer through this again.


Written by Sydney's mom, Jennifer DiMaria (New Jersey)
2000