Adam, Christmas 2004, 6 years old

Adam on his way to get a cath (3 years old)

I'm Tina, and stay at home mom and am married to Lawrence a private security officer and we have 4 kids: Erin is 14, Becca is 12, Hondo 10 and Adam 3-1/2.

Adam was our surprise, I found out I was 7 weeks pregnant with him 3 weeks after having a tubal ligation. I started having preterm labor problems at about 31 weeks and ended up in bed about a month. Then they let me up and he waited a couple weeks– to full term–to finally come. He was born December 10th, 1998 at 8lb 14 oz and seemed healthy, but our family doctor found a small murmur. He had an echo done and wired to the children's hospital. They said there might be an anomaly on the aorta, but didn't believe it to be serious, and we could see them when they would be in our area in about 2 weeks.

On December 20th, Adam refused to nurse and acted lethargic and simply not right. He was jaundicing, so we saw the doctor the next morning. He said the murmur sounded better and ordered a pep light. I was exhausted by this time, so we switched to formula. Adam began to eat again. December 23, we got the light off as his jaundice was improving. Adam seemed to be improving. Christmas Day, Adam was again lethargic and a fussy eater. By the evening of the 26th, he was immediately vomiting anything he ate. He would break out in a cold sweat and was beginning to feel very cold when you held him. We tried pedialyte for the night and headed to ER the morning of the 27th to have electrolytes, etc checked. As soon as the ER doctor saw him, things started hopping. Adam's oxygen levels were way low, his rectal temp was 96.2F, his potassium was 7 (from a central line), his pH was 6.9, he had no blood pressure in his legs, barely any in his arms, his liver was twice the size it should be and he was a very gray color. Our family doctor left a family gathering (he wasn't even on call), to come to the ER and be with us. Adam was air lifted to Louisville, Kentucky (a 4 hour drive for us). Later we were told by the attendants that they didn't think he'd survive the flight.

The doctor at Kosairs Children's Hospital called us at home as soon as they had him intubated and told us to get there immediately. We had to come home and get other kids settled and get clothes before driving down to be with him. Adam had coarctation of the aorta and would need immediate surgery. The heart cath showed that his coarc was almost a complete blockage (it was 1.1 mm). The ductus arteriosus had acted as a bypass to allow him to survive this long, but was closing. They did surgery immediately. A week later he was home, we thought a normal healthy baby now, only on digoxin and blood pressure meds.

Three weeks later we were back in Louisville for another cath. Turns out that Adam had a almost unheard-of second coarc. This time in the arch area between the first and second branching parts. This had a gradient of 60. They decided to wait until he was 3 months old to do an angioplasty on this one. The angioplasty was successful and it was hopeful that he would require nothing but monitoring as he grew.

A year later, we found out that his coarc was not opening with his growth, so was beginning to cause a constriction again. Adam would need another angioplasty. This was attempted June of 2002, but was unsuccessful. The ring of tissue around the aorta is too tough to open with the balloon and the area where the constriction is, in the aortic arch, is too dangerous and constricted to try a stent at this time. Our doctors have decided to wait and monitor Adam and allow him to grow. If he can wait 4 or 5 years without symptoms/problems, they will attempt the stent. If he goes into congestive heart failure, or his blood pressures rises too high, he will have to have surgery on his second coarc. It is most likely that the surgery will have to be done eventually.

Adam is a blessing to be around. He has a charming personality that entrances all he meets. It seems that all he has gone through has given him a special charm.

April 8, 2005 Update

Adam saw the cardiologist today. We got good news/bad news. Good news is there are no apparent changes and Adam looks and sounds good. They only checked his four blood pressures (right/left, arms and legs) They were 139/52 right arm, 71/49 left arm, 88/49 left leg and 87/49 right leg. They also did an EKG and examined him. I told the doctor about Adam's new symptoms.

Adam told me a few weeks ago that if he jumped or ran too much his legs would go to sleep. I asked him what he meant by asleep—did they tingle or hurt or what. He looked at me like I was stupid and said, "No you know like when you go to bed and go to sleep. You don't feel nothing!" hmmm guess that means numb, lol. His school teacher also indicated that he does sit and rest a lot during recess.

The doctor said that that was good that it's not affecting him so much that he's really making a fuss about it or saying it hurts. So he considered that to be "mild" symptoms. Though he said it's somewhat an unusual complaint. But since his circulation is compromised, he does believe it to be his CoA. Anyway, the PC last year had indicated he would probably wait another year to send Adam to Louisville for an MRI, but Dr Sobczyk decided that he wants to start getting him in a summer rotation so that he's not having to miss school for procedures and tests. So he wants him in Louisville end of July or 1st of August for the MRI, high tech echo and an appointment with Dr Recto (the doctor that does the heart caths) He said, that way, if a cath is needed that we hopefully can get it done before school starts. So, it all really depends on what shows on the MRI and also how his "symptoms" seem to be progressing over the summer. Remember him in your prayers. We know that some type of treatment is inevitable, probably surgery eventually. Sometimes, I just wish they would do it and be done, but it just doesn't work that way. They want to buy as much time as possible before attempting the repair. My mind knows that, but the mom in me just wants him fixed and all this behind us.