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Brant's Heart Story
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PICTURES
Pre-op ~ March 16 Pics of Brant in the Pig-O-Stat contraption for his chest x-rays
Pictures from the day Brant was supposed to go for the Cardiac Catheter surgery but it was cancelled ~ March 17
Cardiac Catheter Pics ~ March 25 Getting ready for the operation
The bandages cover the Emla cream on his hands
Saying goodbye before the procedure
After the procedure ... he was awake but groggy
Taking a nap with Daddy
Lucky boy got two new toys!
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Brant has a congenital heart defect
This is his "Heart Story"
After Brant was born, the pediatrician detected a slight heart murmur. Since we were still in BC at the time the pediatrician recommended that we ask our dr. in Edmonton to schedule an ECG (Electrocardiogram) and EKG (Echocardiogram, or Ultrasound of the heart) to get a better look. Brant's first ECG and EKG was on November 27, 2003. We found out at that time that Brant has 2 holes in his heart ... one is called an ASD and one is a VSD. Both holes were small so our Pediatric Cardiologist said that she would take no action at this time, but that she was slightly concerned so rather than waiting a full 6 months til his next visit she wanted to see us back in 3 months. On March 4, 2004 Brant went for his second appointment with the Pediatric Cardiologist. He again had the ECG and EKG and we found out that both his ASD and VSD had worsened considerably and we were looking at the very probable prospect of Brant needing open heart surgery to correct the defect. Brant's blood pressure was also checked at this appointment and it was 115/75 which the pediatrician said was too high. He was then scheduled for a Cardiac Catheter which is a tube inserted through a vein or artery (via an incision) in the groin with a camera on it so they could take a better look at his heart defects. This appointment is scheduled for March 17 (mommy's birthday) and we will find out then if the open heart surgery will be a necessary next step.
Brant's pre-op ~ March 16, 2004 Our appt was at 12:30 and they first weighed him (14 lbs!), checked his sats (98%) and his BP (93/50). Then he had to go get blood drawn (on the off chance he needs a transfusion) and he didn't even cry! Just pouted a few times! Thank goodness they were able to get blood from his arm though and didn't have to squeeze it from his heel like last time ... I don't think I could have handled that! Then he had to go for a chest x-ray where they put him in this really funny looking contraption called a Pig-O-Stat where he had his arms way up in the air and again he didn't cry. The x-ray techs were absolutely amazed because they had never seen a child not cry when put in that thing before! Then we went back to the anesthesiologist who explained the procedure of the Cardiac Cath. He said first they will put this "Emla" cream on Brant's hands and feet to numb them for the IV (Intravenus) needle. Then we will say goodbye to him and he will be taken into surgery for 2-3 hours. Then he will have to be in recovery for another 4 hours but we can wait with him. We have to be at the hospital at 12:45 PM and the surgery is scheduled for 1:30 PM ... so we probably won't be leaving the hospital until at least 8PM. I'll be sure to post an update either tonight or tomorrow to let you know how it all went.
The surgery that didn't happen ~ March 17, 2004 Well, the title about explains it. I fed him for the last time before 9:30 as directed. We got to the hospital at 11:45 and went to admitting. Then we went to pre-op and Brant had the Emla cream put on his hands and was given tylenol. Then the waiting began. We waited and waited and waited. The surgery was scheduled for 1:30 PM. Well at 3:30 we finally were taken up to the 5th floor (recovery) because pre-op was closing. And we waited some more. We were told at that point that it would be at least another hour. Turns out the child that was in for a cardiac cath was having complications and they were also having equipment difficulties. So after waiting and waiting and waiting we were finally told that the surgery was cancelled. By this time poor Brant was starving! When I was finally allowed to feed him he ate like there was no tomorrow! Now they're hoping to get him in within the next couple of weeks and we'll probably find out either tomorrow or the next day when. We're finally home now at 5:30 PM. What a day!
Brant's Cardiac Catheter surgery has been rescheduled for Thursday March 25th Thankfully we won't need to have the blood work / pre-op done again as long as he wears his bracelet for the week. The hospital will call us with a time early next week.
March 24 Update Brant's appointment will be at 7:45 AM in the morning so we have to wake Brant for a feeding at 4:30/5 because he's not allowed to eat after 5:30. Hopefully being the first appt of the day means less waiting and fresh dr.s and equipment. We're really nervous about what they'll say but we know this procedure is for the best.
Brant's Cardiac Catheter Surgery ~ March 5, 2004 We got to the hospital at 7:45 AM and checked in. Then we went to the pre-op where they prepared him for the surgery. They put him in a gown this time instead of the 2 piece pj’s and put the Emla cream on his hands and feet (déjà vu!) Then we waited in the waiting room where Brant took a little nap for til they called us for the operation. We followed the nurse upstairs to the Cardiac Catheter lab and met with the resident and the nurses. Colin signed the consent form and we said goodbye to Brant and they took him away. Then we went back downstairs to collect our belongings and bring them up to Pediatric Post-op on the 5th floor. We left our stuff in post-op and went down to the cafeteria to have something to eat. At this time it was around 10:30 AM. We had some food and then went to the Beary gift store where we bought Brant a little rattle and a Dolphin toy and a cribbage board with cards. Then we went back upstairs (by this time it was just before noon) to see if they had heard anything and they said Brant was on his way! So we waited for a short time and in he came! The nurses carried him back because they said he was too cute to bring back on the stretcher. They placed him in my arms and he was awake but quite groggy. The nurses were all gushing over how good he was, how he didn’t even cry before or after the procedure, and how cute he was. I was allowed to try to breastfeed him right away although he didn’t feed really well since he was still pretty groggy from the anesthetic. We had to keep his leg still and keep him lying flat for 4 hours after the operation. After I fed him he fell asleep in my arms and slept on and off until 4 PM. At that time we were allowed to go home as soon as the dr. had been in to see us. Unfortunately the dr. was held up in the Cath lab and didn’t get a chance to come see us til 6:30. When he came to see us he told us about the procedure and I’ll write here what I remember. He said that they checked out Brant’s ASD and VSD and found that Brant didn’t have a full AV Canal defect because there were no holes between the upper and lower chambers of his heart. They also checked the health of his lungs by pressurizing them with oxygen (I was a little unclear on this one) and he said that so far his lungs are still healthy which is good. He said that ideally they would like to perform the Open Heart surgery in a few weeks and that they will discuss Brant’s case at the weekly meeting with the surgeons on Tuesday to determine when they can perform it. He then asked us which medications Brant was on for his heart and we answered that he had never been prescribed any. He was quite surprised by our answer and gave us 2 prescriptions that he told us to fill right away. One is to regulate Brant’s heart rate and the other is to prevent further buildup of fluid on his lungs. We also asked the dr. if it would be possible to avoid Open Heart surgery and repair Brant’s heart with a less invasive Cardiac Catheterization procedure instead. He explained that there is an experimental procedure that is being performed by a dr. in Quebec but from the research our dr. has done he feels that Brant is not a good candidate for this procedure because Brant is so young and has quite a serious defect and he doesn’t feel comfortable using that procedure on Brant’s valves. (Again I’m saying what I remember here so I may have mixed it up a bit). We did ask the dr. we were talking to if it would be possible to switch from our current Pediatric Cardiologist into his care and he said that would be fine but we would have to make the request in writing. We asked for this because we’ve heard many good things about this dr. and we know quite a few people who have highly recommended him. Also, we know for a fact that he will be at the meeting on Tuesday next week whereas he wasn’t sure if our current dr. would be there. He wants us to make an appointment to see him again on Tuesday April 6 so he can also perform another Chest x-ray. We finally left the hospital and arrived home at around 8:30 PM. It was a long day and we were exhausted. We are thankful the procedure went well and that Brant seems to have bounced back so quickly and is already back to his regular self. He doesn’t seem to be in any discomfort and his incision hasn’t been bleeding either. Now we’re waiting to find out how much time we will have before his Open Heart surgery. We’re nervous about it but on the other hand we’re thankful it can be done and that Brant will likely pull through it fine and be able to live a happy and healthy life afterwards.
April 2 Update Brant's Open Heart Surgery is scheduled for April 12 ... Easter Monday. Yes you heard right, not this Monday but next. Nothing like quick! I called the hospital today because my parent's wanted to fly me and the kids to BC for the weekend of April 16 so I thought I'd check with the hospital to make sure and she said, "well why don't we just book a date now ... how's April 12?" I just stammered "sure". So it's set. There is still a possibility it might be postponed if a baby is born and needs emergency Heart Surgery or if Brant gets even so much as a mild cold it won't happen. So were hoping and praying he stays healthy and he can have the surgery and he'll be on the road to recovery soon.
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Notes by Brant's mommy March 11, 2004 When we found out that Brant had a slight heart murmur we were definitely alarmed! However the pediatrician who was examining Brant at the time said that it was only a slight murmur and that he wasn't overly concerned about it at this point, but that we should keep an eye on it in case it got worse. He also recommended that the ECG & EKG be performed after our return to Edmonton. Prior to the appointment on November 27, 2003 I was pretty nervous about the whole thing. We were praying that Brant only had a slight hole in his heart and that it would close up on its own. However the news we received was that Brant had 2 small holes in his heart. We were thankful that they were small but disappointed that there were two of them. Between the 2 appointments in November and March I remember several times having this "feeling" that Brant's heart condition was going to require open heart surgery to correct. A few things tipped me off, for instance, the Pediatric Cardiologist wanted to see us again in 3 months instead of the standard 6 months. Also, Brant to me didn't seem to be growing as well as he could have been. Between the beginning of January and the end of February he only gained half a pound, and while our dr. assured us that he was still following the curve on the Down syndrome growth chart, I remained worried. As the March 4 appointment drew nearer I became more and more nervous about it. And when the Pediatric Cardiologist confirmed my fears, thoughts of all the Biology classes I had taken in high school flashed through my mind. Who would have thought I would actually have needed to remember all that stuff? So far it has been an emotional time for me but I know that these surgeries are for Brant's best. I was doing some reading about heart problems in children with Down syndrome last night before bed and learned that back in the 1930's the average life expectancy of a child with Down syndrome was 9 years old! Today it is over 50 years. So I am so thankful that these surgeries are possible and that the people who get them can live happy and healthy and long lives afterwards. Our journey with Brant's heart is still far from being over but I draw strength from knowing his health is in God's hands and also in the fact that many before him have gone through it and are thriving now. I hope to continue this page on Brant's heart in the future with updates and pictures. (Unfortunately I forgot to bring my camera to his last 2 appointments). Hopefully by journaling our account on this chapter in Brant's life we can help those who also are faced with this scary prospect in their future as well. ~Katrina
A bit of Heart Info (for those of you who forgot what you learned in high school Biology class like me!) A Congenital Heart Defect is one that a person is born with. About 40 % of all children with Down syndrome have a Congenital Heart Defect of some sort. Many of these defects will correct themselves on their own, some can be closed with the Cardiac Catheter Surgery (where a tube is inserted through a vein or artery via an incision in the groin area) and others can only be corrected with Open Heart Surgery. The heart is a strong pump made of muscle. It is about the size of your fist. The heart has 4 chambers which are separated by walls made of heart muscle. Valves between the chambers open and close to allow blood to flow in only the correct direction. Blood is pumped into and out of the heart via the major vessels (arteries and veins) that are attached to it. The two upper chambers are called the atria, and the two lower chambers are called the ventricles. Blood that has been circulating n the body and is low in oxygen returns to the right side of the heart, where it is pumped to the lungs. In the lungs the blood receives fresh oxygen and returns to the left side of the heart, where it is pumped into general circulation, delivering oxygen to all parts of the body. When a baby has a heart defect, there may be a hole in the walls between the chambers. The result is that too much blood is pumped to the lungs and not enough blood is pumped to the rest of the body. Consequently, the body does not get enough oxygen-carrying blood. In addition, because a hole can disrupt the flow of blood within the heart and allow blood to pool, this condition can raise the risk of serious cardiac infections.
There are several types of defects: The most common in babies with Down syndrome is called an atrioventricular canal defect or AV Canal, as it is commonly called. An AV canal is a large hole in the center of the heart. This means that the walls between the two upper chambers (the atria) and the two lower chambers (the ventricles), as well as the valves between them, may be deformed. This large opening in the center of the heart allows the red oxygenated blood to mix with low-oxygen blood and return to the lungs. This extra effort in turn causes the heart to enlarge. In addition, the body receives less oxygen since it receives red blood that is mixed with low-oxygen blood. Most infants with AV canal grow very slowly and remain small. Because of the high volume of blood that is pumped into the lungs, high blood pressure may occur there, resulting in damage to the lungs and blood vessels. Surgical repair of an AV canal usually restores blood circulation to normal. Another common heart defect in babies with Down syndrome is the ventricular septal defect (VSD) A VSD is a large opening between the ventricles in which, as with AV canals, oxygenated and deoxygenated blood mix, resulting in similar problems to AV canals, including low blood oxygen levels, an enlarged heart, and hight blood pressure. There are other less common heart defects including holes between the two upper chambers (atrial septal defect or ASD), problems with the heart valves, and defects in the major arteries attached to the heart.
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