PEKIN, Ill. (AP) — The parents of Tucker Alan Doubet hold their 3-week-old baby close to them — snuggling him, stroking his long brown hair and wondering how they will meet the needs of their special child.
Tucker was born Dec. 13 by cesarean section at Pekin Hospital with no arms or legs. Other than that, he appears to be healthy, though doctors are performing tests to see what caused Tucker's arms and legs not to grow during gestation and to see if there are any other problems associated with his condition of tetraphocomelia.
Tetraphocomelia simply means the "defective development of the arms or legs, or both, so that the hands and feet are attached close to the body," according to MediLexicon.com.
Tucker is the son of Bradley Doubet and Amanda Perdew of Pekin.
The lack of growth of Tucker's limbs could be genetic, but that is not yet known. Tests will be performed to determine a cause later.
Perdew said that she went to the doctor's office to get a sonogram at 20 weeks and the doctor realized then that there was a serious issue with the baby.
"They didn't see much of his arms or legs, so they sent us to Dr. (Charles) Egley at Methodist (Medical Group)," said Perdew. "He diagnosed it as tetraphocomelia.
"Their theory is that it's a genetic issue behind it, but they have yet to find that out. We went (Wednesday) to OSF (Saint Francis Medical Center) to the genetics counselor and doctor and they're going to run some tests later. Because he doesn't have limbs it's difficult for them to draw blood to do testing. They are trying to prioritize what to do first and stuff like that. We have to wait to find out if he has a certain syndrome. That would help us know for future children, and also for (Tucker) if he has children in the future."
Perdew said Egley asked her at the time if she had ever considered an abortion.
"I never thought I would have to make that decision in my life," she said. "It was a big (emotional) hit for me.
"Brad and I talked about it that night and wondered what kind of life we could give him, and if there would be mental issues as well. We could not help but think negatively that night. The next day Brad called me on his lunch break. We decided that it was not our decision to make — if he was going to live (when he was born), then we needed to let him live. No matter how he is, he is still our baby boy."
Perdew is breastfeeding to give Tucker the advantages that it can provide.
The situation has been hard on all family members.
"I think I lost it more than anyone," said Cindy Fitzanko, Tucker's maternal grandmother. "I went to the sonogram appointment with them and when they were doing the sonogram I was thinking in my head, 'I don't see any arms or legs.'
"I thought maybe he was sitting in a fetal position, but when he called us in and told us I went hysterical — not just because of him, but because I couldn't do anything for (my daughter). I couldn't change the situation for her. Once he was born it doesn't matter to me anymore. He's still beautiful, and we will help them out in any way that we can."
The baby's left foot is a nub similar to the bottom of a foot with a single little toe. He has a little toe on the right side that is sunken in, which he can wiggle. He also has a nub for one arm. There is no arm on the other side.
Doctors did a sonogram of Tucker's brain and kidneys and an echocardiogram of the heart, and so far they have found no additional medical issues which can accompany tetraphocomelia. In the coming weeks doctors will conduct tests on all of Tucker's organs to make sure there are no further issues.
"In these cases there are normally more than just the limbs missing, but everything seems to be OK," said Bradley. "They are just not entirely sure."
The baby will see an optometrist in a few months to determine if his eyesight will be an issue. Tucker can follow objects moved in front of him, so the couple believes he has no issues at this point with eyesight.
The couple still wonder how they will provide for some very special needs.
"I want him to have as normal a life as he can," said Perdew. "He's going to be able to do everything, but it's just going to be a different learning process.
"Right now there is not a lot to change as far as lifestyle goes. Any normal baby with limbs would not be doing a lot with those limbs at this age, either."
Bradley said that Tucker is in some ways less inhibited than babies of his own age. He has already rolled over from his stomach to his back because his arms and legs are not blocking the roll.
Technology is advancing and there could be a lot of opportunities for Tucker to make his life easier. Money, they said, will be an issue. Perdew and Bradley are both currently unemployed, living with her parents and do not have a vehicle. They have a truck, but it cannot accommodate a rear-facing car seat. Bradley became unemployed last week. They have applied for public housing.
The baby's grandmothers are planning benefits in the future to raise money for special items the baby will need, such as a wheelchair. Bradley said they are considering perhaps softball and disc golf tournaments, a car show and other options. He hopes that local businesses will be willing to sponsor those kinds of benefits and provide items for raffles and so forth. The couple and their extended families need some help figuring out how to put on a benefit, said Bradley.
Clothing will also be an issue for Tucker. A nurse at the hospital brought in a bag of clothes before the couple took Tucker home that she had altered, including a Christmas outfit. They are hopeful that someone with sewing skills could help make the baby some clothes. Tucker is 12 inches long. Preemie clothes are 17 inches long from neck to bottom.
"It hard to get things to fit without it bunching up at his neck," said Perdew.
The couple will be contacting Easter Seals soon to see what services it can provide.
Source: Pekin Daily Times, http://bit.ly/JLdko8
Information from: Pekin Daily Times, http://www.pekintimes.com