Polito, Dante

I've been logging on to this web site for months now and have never had the time to write in. Every day is spent driving an hour into Boston to see my beautiful baby boy. I've been reading all the cherubs' stories hoping to read one similar to mine but it's become evident that not one is the same or even similar. Well, let me tell you our story, from the beginning.

I learned I was pregnant when Dante was 10 weeks old. I was very active during that time, mountain-biking, hiking, and swimming. I was very healthy at that time and was taking good care of myself, even taking vitamins every day. I had enjoyed an occasional beer or wine before I knew I was pregnant, but nothing excessive. I was surprised and thrilled about our evolving family. Eric and I had been married for less than a year (after dating for 10 years) and we had just bought a house in a neighborhood that was well-suited for kids. I enjoyed being pregnant. I didn't suffer from any of the usual nausea and I didn't miss PMS. The sixth and seventh month of my pregnancy, I gained 18 pounds and proceeded to get a little scolding from my OB. I wasn't eating any differently and I comforted myself with the thought that I was going to have a roly-poly healthy child. At 32 weeks, they decided I was measuring too large for gestational age and diagnosed me with polyhydramnios. My OB was extremely cautious and scheduled me for ultrasounds and 2 Non-stress tests twice a week. Every week, my anxiety over a problem with my baby lessened as each test came back normal. I was excited when my water broke on Jan 3rd, his actual due date.

As labor went on, I had thick meconium and his heart rate decelerated on contractions. I was rushed to the OR for an emergency C-section. I heard the doctors saying he had the cord around his neck when the delivered him. The pediatrician told me they were going to try to prevent him from crying so he wouldn't aspirate. I heard a whimper-like cry, like a wounded kitten, when he was transferred to the warmer with the pediatrician and nurses. The pediatrician turned his head to me and said he was o.k. even though I knew it wasn't. I asked what the Apgar was and he said 4 and 6. After that, Dante was rushed to the special care nursery and my husband went with him. Things became surreal and like a nightmare. I was able to see him for 5 seconds as an MD and respiratory therapist whipped him into my room in an isolette. They transported him to St. Elizabeth's NICU, a half-hour away. We were told Dante had PPHN, or persistent fetal circulation, that he was very sick and they weren't sure if he was going to make it. The doctors and nurses at Norwood Hosp. fought with my ins. co. to get me transferred to St. E.'s where Dante was. We won and I was able to be with him. My husband and I sat with him, day and night, just cupping his head with our hands and telling him how much we loved him and encouraging him to get better so he could come home and enjoy life with us. He was on an oscillating vent, had a chest tube and had multiple meds to try and open up his pulmonary vasculature and to keep his blood pH where they needed it to be. During his 18 days on a HIFI vent, we almost lost him hundreds of times, at one time he had bilateral pneumothoracies needing chest tubes on both sides. I couldn't stand the fact that thoughts of a funeral for my precious babe were actually going through my head. My husband and I prayed that Jesus and Mary would hold Dante and comfort him and heal him. Slowly, he became a little more stable and was able to go to a regular vent. He was writing his own book for the doctor's though and they couldn't quite figure him out. He had an EKG, EEG, Chromosome tests, multiple x-rays, etc. They sent him to Children's Hospital on Jan. 21 for a cardiac workup. Thank God, they found nothing! It took them a week before they found that he had an anterior right-sided CDH- supposedly a less severe hernia. They decide to wait until he was on lower vent settings till they did the surgery. He never reached the lower vent settings they were hoping for. He would get better and then have a set-back and the vent support would increase. He would have bronchospasms so intense that they had to bring him back from turning blue more times than I want to remember. They had to paralyze him once again for a couple of days so that he would allow the vent to help him. He is on major bronchodilator nebulizers, diuretics, and narcotics (Dilaudid and Ativan). They have tried to wean his narcotics but have been unsuccessful so the plan is for him to wean naturally as he grows-so far, so good. On Feb 15, he went in for his CDH repair. The hernia was larger than they expected and bilateral. A portion of his liver was on the right side, central, and a bit on the left. He came through the operation like a champ (Dr. Jay Wilson performed the operation and is touted to be the world's best CDH repair man. Thank God for him!) and we had hopes that that would be the cure. While he was in the OR they did a bronchoscopy to see if he had "floppy airways". He didn't but the pulmonologist speculates whether he has fewer bronchial trees than normal and that may be contributing to his vent dependency. He remains a mystery and nobody knows what to expect. At present, he's gone from 6lbs.11oz. to 11lbs. 7oz. being fed breastmilk through an NG tube. They just started him on Aminophylline and he hasn't had any bronchospasms since. From an x-ray 2 days ago, he's being treated for pneumonia with antibiotics and he also needed another dose of Lasix.

We're hoping he can wean off the vent while nasally intubated otherwise the issue of a tracheostomy and long term ventilation will be brought up. I'm concerned over the development of my child, I know we'll have to teach him how to eat, etc. and I know being nasally and orally intubated can lead to oral aversion and long-term issues. I just don't want to have another foreign body placed in my son and I'm afraid of him needing to be vented for a long-term, maybe even for life?!! The doctors have no way of knowing. I was hoping maybe somebody out there may have some insights, something?! You can e-mail us at SHOCKABETTY@prodigy.net. I apologize for this rambling e-mail. I hope it was received o.k., I'm pretty computer illiterate. So, anyone out there who prays would you keep Dante in your prayers? He's a brave strong boy who's doing his best to come home to Mommy and Daddy. We just pray that we do what's best for him and that's very tough to figure out sometimes.


Written by Dante's mom, Kristen Polito (Massachusetts)
1999