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Stories of Lost Children

The Story of Bobby/Cystic Hygroma
by Tracey Petitto, Marlborough, NH, U.S.A.

During the 29th week of pregnancy, I lost my mucous plug and went for an ultrasound. I could immediately tell that something was wrong by the way the technician was acting. The Doctor came in and said it looked as if my baby's intestines were growing outside of his body (A gastroschesis). My husband and I were devastated. A level 2 ultrasound was scheduled for a week later, and we learned everything we could about gastroschesis.

During the level 2, we found out that I had no amniotic fluid and that the baby actually had a massive cystic hygroma (no gastroschesis). This is a malformation of the lymphatic system. We were told his airway was likely crushed and that due to the severity of the cystic hygroma, he would not survive after birth. He was delivered via crash c-section at 9:21 PM on April 12th, 2004. I heard a small, wet cry, so I knew he could breathe. 30% of his body was affected by the cystic hygroma. It enveloped his right hand, arm, chest, neck, back and left armpit. In addition to the cystic hygroma, his lungs were underdeveloped (being a 30 weeker)so he was put on a ventilator. He was transported to Childrens Hosptial in Boston, but I had to stay in New Hampshire to recover from my c-section. I didn't know if I'd ever get to see or hold my baby once he left.

Against all odds, he survived his rocky beginning. He endured endless painful procedures, and had life-threateneing infections. For him, long term survival meant dozens of major surgical procedures, medicine regimens and daily in home nursing care and physical therapy. Bobby was up to the challenge, and he thrived in spite of everything. His prognosis was changed to guarded, but good.

We were able to take our sweet Bobby home after 2 months. He had done so much better than anyone ever thought he would. We cherished every minute with him, and celebrated every small milestone.

He had his first major surgery on September 3rd. He was home within one week, and he continued to thrive. His surgeon was able to "Debulk" Bobby's arm, shoulder and part of his chest. The doctors were confident that his arm would have normal fuction and his hand would have good function. We started physical therapy and were making huge leaps. Bobby's next surgery was scheduled for December 3rd.
We did have some hospital stays for infections, but Bobby always bounced back.

On November 13th, Bobby was admitted to the hosptial for bronchiolitis. As his cold got better, his oxygen saturation got worse. He had developed a life threatening airway obstruction, and he needed sclerotherapy, treatments where irritating agents are injected into the cystic hygroma. The body responds to the treatment as if there are 3rd degree burns. Bobby never recovered from the sclerotherapy, and after a vigirous fight, he passed away on January 3rd at 11:59 PM. I always say that he decided not to waste one minute of his last day on earth!

He was such a special and rare soul. He brought so much joy into the lives of so many. His smiles were like sunshine and he shared them with everyone.

My husband and I take some comfort in knowing that Bobby will never have to endure another painful procedure, but he was a happy boy who loved life, in spite of his issues. Devastation is the only word to describe the impact of his passing on my family. I constantly ache for him, and somtimes at night I wake up and for a few seconds I forget that he is gone, and then...

It was such an honor to be Bobby's Mom. My heart is so full of love for him. He gave us so much just by being him. I woudn't trade my time with him (8 1/2 months) for anything in the world.

They say that time heals all wounds, but I don't know if I want to heal. The pain is raw, exquisite, overwhelming, familiar, part of his story...

I would love to hear from others grieving:
tegact@yahoo.com


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