I was 22 years old when my son, John William Nugent was born on November 13, 1983. He weighed 3lbs and 15 ozs and was 17 inches long. Back then, doctors didn’t perform ultrasounds like they do today. When I went for my prenatal visits, they did an ultrsound that showed the head and the heartbeat. I was thrilled each time I got to hear his little heart beating. I carried my son to full term. His due date was November 22 but I had to have a caeserean section nine days before that because they found out that he was breech. The entire time I was carrying him, neither I, nor the doctors knew he was sick. Apparently, his body was using my kidneys since he didn’t have any. When he was delivered, the doctors had to do a tracheotomy on him because his esophagus didn’t develop. They also found out that while his anal canal had developed, there was no opening. One of his legs was turned at an abnormal angle due to his being in the womb with little to no amniotic fluid. The doctors told me and my husband that he had a condition known as Potter’s Syndrome and that there was no cure. They said he would not live over 48 hours. We were devastated. Not long after birth, Little John needed a blood transfusion so my Dad, being O – , donated some blood for him. The doctors decided that they would send him to a larger hospital that was equipped with a nicu so after they let me and my family get a brief look at my precious baby boy, they loaded him into an ambulance and took him two hours away to University Medical Center in Jackson, MS. He spent four days there and while he was there, the doctors performed a colostomy, a procedure where the intestines are pulled through the stomach so that his bowels could be emptied into a bag. When it was decided that they had done all they could do for him, he was sent back to the hospital he was born in and where I was still a patient. I visited with him every day. It was very heartbreaking to watch when his trach tube would get clogged and he would turn blue while the nurses got his tubes cleaned out. Finally I was allowed to hold him. I will never forget holding him in my arms the first time. He was such a little fighter! He had such a strong grip when I would place my finger in his hand. I would just sit and rock with him and sing to him. I visited him every day and every day was filled with being scared of when he was going to be taken away from me. The doctors had told us that he wouldn’t live over 48 hours but he lived for 17 days. I am so thankful to the Lord for allowing me to have those days to bond with my only son. Little John was called home to be with Jesus on December 1, 1983. My little boy touched many lives in the short time he was here on earth. Now he flies with Angel wings in God’s glorious kingdom. As his would-be 30th bithday approaches, I pray he is watching me from Heaven and patiently waiting for me to get there. I will be so happy to see his beautiful face again! The medical community has advanced so much in the last thirty years. My son’s pediatrician, Dr John Coffey, wrote about Little John in medical journals. I hope that my son’s case was able to help doctors learn more about Potter’s Syndrome. Just today a friend of mine heard on the news that a little girl was diagnosed in the womb with this disease and her Mom’s Doctor kept her injected with a saline solution to form an amniotic sac so that she could grow and develop more normally. Although she was born without kidneys, she is alive and being kept on dialysis until kidneys can be found for her. My thoughts and prayers are with this little baby and her brave parents. It is just awesome that she has a very good chance at being able to live and beat this incurable disease! It is truly amazing how medical technology has changed in the last 30 years.

 

The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.

 

Phone: 763-772-3868

Fax: 866-870-9175

Prenatal Partners for Life
PO Box 2225
Maple Grove, MN 55311

Email: mary@prenatalpartnersforlife.org