Anyone Have Problems with ASD (Congenital Heart Defect) in Infant?

Hi J.,
I have a suggestion that could help. When you pray, I am guessing that you are asking God to help Olivia to be strong and well (in the future). Since you are asking God's help and believing that it will be done (in the future), start thanking God now that Olivia is well, happy, perfect and strong. Begin thanking for what you are asking for as already having received it. If this is new practice to you it seems odd at first. I am NOT suggesting that you stop taking her to the dr. or stop giving her meds if she needs them. Envision her walking, running, playing, laughing, growing like every normal child. In your mind's eye, "See" a well child, not a sick one. As you practice this style of prayer, your fears about what all could go wrong and how devastated you'd be if...etc. will diminish. If she should have a difficulty, then imagine it is just a bump in the road toward her being whole and strong. (In a rough patch, we might be tempted to imagine that this new prayer is not working. That is incorrect.) When you receive answer to prayer, you give thanks. Start by thanking God today for her wholeness. This is a new method for me and felt strange at first. I began about a year and a half ago and it has changed my life and lessened my fears. When I give thanks for anything, God's answers Always exceed my request.
(If this seems odd, imagine it this way: If you got sick at school, called your mom to come pick you up, you had the confidence in her that she was coming as quickly as possible. You didn't begin worrying that she wouldn't come just because she wasn't there Yet. You knew she loved you and was answering your call for help in the best possible way. Perhaps your mom had to call your aunt to pick you up.) Sometimes answers come in a way we hadn't expected. All resources are God's. You and your family are blessed! C.

Hi,

My degree is in Respiratory Therapy and my senior year of college I did a summer internship at the Children's National Medical Center in Washington D.C. In case you don't know, my job specializes in running life support equipment and working with people that are having problems with their respiratory or cardiac system. I worked with several children that had an Atrial Septal Defect. Depending on the size of it it may close on its own. If it does not close it is possible for the cardiologist to close it, in the cardiac cath lab. This is a much better option than open heart surgery. I have worked both in the cardiac cath lab and in open heart surgery. In the cath lab a thin catheter will be threaded up to the heart through one of the large vessels in the childs leg. And then using radiographs the tube can be visualized as it travels up to the heart and the repair can then be made. ASD is very treatable. Your child probably will not have any long term effects from this, will have a normal life expectancy and live a normal life. I know you are worried but she will be ok. If you have any more questions please ask me.

Lisa

My son had the surgery for ASD 2 years ago when he was 4 yrs old. We are in Austin, and Dr. Fox was the surgeon. We checked to make sure he had a good reputation. There's also a good parent support group here. I practically lived at the hospital for a week, just going out to get meals at the Ronald McDonald house.
We did not find out about the heart defect until my son was 4 yrs old. We knew he had health problems and did not gain weight well. I still have a lot of anger toward the pediatrician during my son's first year who blamed us and sent us to parenting and nutrition classes instead of finding the real problem.
After the surgery, my son gained more weight, and became a lot more active. No longer content to sit on my lap and read a book, and didn't tire as quickly when playing. Right after the surgery, he had to take aspirin for several weeks and antibiotics when going to the dentist. Now just yearly checkup to make sure everything's still OK.

Hi J.! I too like many others who have responded had a baby girl and was told within hours of her birth that she had congenital heart defects. They did an echo in the NICU and then gave us the news. Given this was my first baby, I too wept at the thought of everything she would have to endure. I too spoke initially with Dr. Petit (this is Nov 2007) of TX Children's Houston but because he was new on staff and I was in Sugar Land, they recommended that I see Shannon Rivenes. The best advice I was ever given! This woman is beyond measure. God uses her in such a way that words cannot describe. We had an ASD/VSD, PDA and tricuspid valve all that needed repaired. The plan was to get Grace to 4 months of age. Every moment was spent watching her breathe and trying to get her to eat. It became difficult to even get her fed through the G-tube and with several visits in and out of hospital, we were finally told that the next available opening for surgery would be ours - she was 2 months old. I never EVER dreamed I'd pray to HAVE surgery. There are no words to describe our last night together pre-surgery. Just she and I rocking through the night, praying that God would use this surgeon's hands in such a mighty way that Grace would be given life to live. As many have said, TX Children's is #4 in the world. There are 4 pediatric surgeons - all of which are EXCELLENT. They do 400 surgeries a year. When I first was told this, I thought, but given that this is such a routine, will they be as careful, but the blessing is that they've seen so many things that they are prepared to deal with whatever they find and it was so true in our case. We actually had the newest edition to the surgical staff, Dr. Jorge Salazar, and he'd only been at the hospital for under a year. He put us at ease IMMEDIATELY. Another blessing revealed itself in post-op in that our cousin worked with him in San Antonio and gave him the highest praise and told him our daughter could not have been in better hands! We respect him immensely and are eternally grateful. So it was all in God's plan that this man save our daughter. There's more to the story but you get the idea. Our daughter gave us the biggest smile as she was carried away and I gotta tell you that from that moment on, I knew she would be ok. We asked the nurse to call us every hour and give us an update in the waiting room, no matter how small, and she did. Every time she called, I was more and more at ease. She left my arms at 2:30pm. At 8:30pm I saw her again. It was the greatest moment as a Mom to know that believing in Him brings miracles. She is our daily reminder of God's blessings and we couldn't be more grateful. Having this constant reminder will bring you peace and joy all of your days.....so focus on your faith and all will be given! God picked you for her, how lucky is she! God Bless You!

J.,
I know how you feel, my daughter was born with a hole in her heart, too. many test were done, but one dr told us it would heal by itself in time.
Thru the years we watched her carefully but let her be herself, the dr told us she would never be able to play basketball, or any stranious (sp ck) sports or that she could not have babies,
we never approved surgery, today she is 32 yrs young,
when in school she play ran, loved basketball, she was afraid to have a baby, at age 27 she had her own baby, I was there with her and to this day no complications.
God has been awesome in taking care of her.
God's grace will come over you and your baby, too.

When you go to the Dr. ask him How can XANTHONES help my baby?
www.pubmed.gov the National Lib of Med, will give you the science behind xanthones, enter in search, be prepared when you go to the dr,
xanthones are powerful anti oxidants, anti inflammatory, anti viral, etc.
all my granddaugters from the age of 4 months have been taking these, especially when they go get there shots, they don't get fevers, and have not gotten sick in the last 3 yrs of taking xanthones.
so ask the dr,
read about them,
get informed, People perish because of Lack of Knowledge.

God will be with you and your baby, O.

thanks,
O. G.
Round Rock TX

My Daughter just had open heart surgery on Sept. 30. for her heart defect. It isn't the same as Olivia's, but none the less still scary as heck! She is doing great went through it with flying colors. She is 3 years old and only stayed in the hospital 4 days... yep four days unbelievable.
Her doctor is Dr. Cannon at Texas Children's and her surgeon was Dr. Charles Frazier.....THE BEST!! so if you get a chance to pick your surgeon he comes highly recommended. We were on a 3 month waiting list because we wanted the best. It is scary, but with all the technology and knowledge of the TCH staff you are in good hands. With my daughter this came as a surprise. We weren't thinking she need surgery until later in life. If you didn't see her scars you wouldn't know the ordeal she has just been through. If you need to talk give me a call ###-###-####. And God Bless you and your angel. He has blessed me with my little girl and I never take a day for granted.

My little guy was born with the same thing. We went down to TX Children's and had the ultrasound and EKG at like 2 or 3 weeks. They were comfortable with the fact that he would probably grow out of it and that was the extent of it. Now, as a 13 month old, he is healthy and happy and no problems in the last 13 months.
Know that God has His hand on your little blessing and trust He will keep her safe.
Good luck to you!

J.,

My daughter was born with an ASD, VSD and also an interrupted arch. She had a lengthy open heart surgery at Texas Children's when she was 6 days old (cannot say enough great things about Texas Childrens!). She had a complete repair and is doing awesome! She is now 5 years old and at her last cardiology appointment, her doc said if he didn't know her history, he would think from her echo cardiogram that she was born with a completely healthy heart. Right after her surgery she was on a blood pressure medication called captopril, but only until she was 5 months old. She has no activity restrictions and is gorgeous and healthy. The scar on her chest, well you have to search to see it, it is so minimal.

I know how scared and sad you are to find out your precious baby has an ASD. Like some have already said, it could close on its own, but if it does not, know that the surgery for this is so very successful and she will be healthy and fine afterwards. If she does require surgery, they often can make the incision under the child's arm, so the scarring is hardly visible at all.

It is hard to look at other parents with children born completely healthy or with the biggest concern being ear tubes and not feel a little shorted. But know that God chose you to be your daughters mother. He knows you can do this and walk through this with her in a way no other mother could do for her. I have a son born totally healthy, and while I adore him as much as my daughter, there is just something about a baby who over comes something. My little girl is amazing and special and such a gift. Each milestone so much sweeter. You will relish your daughter in ways that mothers who have not walked through a medical crisis with a child will never understand.

She will be okay. I know she will. Praying for you. And check out www.littlehearts.org. A great congenital heart website and support group for parents of heart kids.

J.,
I'm 37 and I was also born with a congenital heart defect. Just wanted to ease your mind a bit from a different perspective. My parents had to wait until I was 5 before I had my open-heart surgery. It was performed at the Texas Children's in Dallas, TX. I had an irregular valve that was mostly closed and needed to be opened to allow proper flow. I was also told I had a hole in my heart. Most of my memories of the time that I spent in the hospital are actually fond. I remember the clowns that would come around, the flea circus, and the presents. There were some bad times but I barely recall them. Most of my discomfort came from the blood they would take every now and then, but not from after the surgery. It is not as bad as you would think. Just wanted you to know that whatever you are imaging, it will be maybe half as bad. Plus, before my surgery, I remember being the slowest kid in the playground because I always got too tired much faster than the other kids. Then just a few months after the procedure I was playing soccer on a league. I have been very active in sports my entire life now. I still had/have issues and always will though. I had another open heart surgery to replace one of my defective valves that got increasingly worse as I got older. That surgery went well too, but I must admit that I won't be forgetting the pain from that one. I just had my first child last April 08. It went well and my heart did great! The baby is perfectly healthy too. Good luck, I hope this helps.

Hi J.,
I did not go through this but I have a friend who did and had to have a surgery on her baby girl when she was just few months old. So I couldn't tell you the ordeal you have to go through but my friend's little girl is healthy and beautiful 10 year old now. So just letting you know that your girl will be fine too. Good luck and hope all goes well!

HK

J., I've been down this road w/ my youngest. Count your blessings in the early knowing and educate yourself. Medicine has such come a long way in this arena. At 6 mos. in-utero, my baby was found to have a heart murmur and was born w/ an ASD.

Many children are born w/ ASDs & will, eventually, outgrow that heart defect as long as they thrive and develop normally. That said, your child must be monitored closely by a pedi. cardiol. & given an annual EKG & sonogram. I'm sure your cardiol. already mentioned that, as your child grows annually, the hole is supposed to get smaller each year. That's one of the things the cardiol. is monitoring.

An echocardiogram will be necessary at some point to determine the size & location of the hole. If the hole is small, the ASD may be corrected through a less-invasive procedure instead of open-heart surgery. They snake a catheter through the child's groin and implant a device called the Amplatzer Device which plugs the ASD hole. If that's not a possibility, then open-heart may be the next alternative.

In 2004, we chose TX Children's Hosp. in Houston to do our daughter's procedures. At the time, TCH was in the Top 10 Pediatric Hospitals in the Nation and Top 5 Pediatric Cardiology Hospitals. My daughter, Heather, also has a Mitochondrial Disorder and Autism Spectrum Disorder, so we also have numerous other specialists at TCH. However, she is very atypical (in her disorders and her reactions to medicine and procedures) and we REALLY needed to have our minds at ease when it came time for her heart procedures. Choosing a top pedi. cardiology hosp. provided some comfort during this very emotional time. Her drs. attempted the catheter proc.; unfortunately, it was unsuccessful and she ended up having to have open-heart surgery 6 mos. later.

Bless you and your family J.. I understand all too well the stress and suffering you endure at this time.

Hi, congratulations on your beautiful baby (and such a great name!) My dd (now 7 months old) was born w/ Down Syndrome & about 50% have heart problems. She had an ASD & VSD. She had open heart surgery on Aug. 20th and is doing GREAT. I can't tell you how hard it is to let her go into that surgery room but Texas Children's is one of the top hospitals and I can tell you she did wonderful. Just after three days she was wriggling around and reaching across her body. Children are so resilient! We were in the hospital one week. She has bounced back and is finally growing again (she stopped gaining weight at 4 months since she was exhausted while eating). God's gift of strength amazes me...I know I can't handle a lot of these trials but somehow he gives us the knowledge and strength to make it through. If you want details on the process, procedure, recovery, etc. just email me at ____@____.com. I would be more than happy to share! Good luck with whatever you choose in the future...surgery or not. Typically, these surgeries are 'one and done.' Once they repair the hole, they are fixed for a lifetime. :) Best wishes!

Hi J.:

Congratulations on your baby girl! My oldest daughter Madison was also born with an ASD/VSD. She was diagnosed when I was about 30 wks pregnant and had open heart surgery at 2 months of age. She still has a small hole in her heart wich may or may not close fully, but it should not affect her in her and there are no limitations placed on her activities.
Her surgeon was Dr. Burke at Miami Children's Hospital, one of the warmest persons I have ever met. When we moved to TX 2 years ago, I had to find a new Cardiologist for her yearly monitoring. We chose Dr. Petit with TCH - he was great with her too.
I also have a son which I adore (he was born with out any problems), but as one of the other ladies posted...there is something special about my 5 year old princess. God is with you and your family, and he will take care of you.

I pray that her little heart grows big and strong. So sorry your going threw this. Congradulations on your blessing. God bless you in this time. Sorry I dont have any advice just prayers.

Hi J.,
So sorry you are having to deal with this. When my daughter was born almost 10 years ago she had an ASD and VSD. We had to take her straight to the cardiologist the day we were released from the maternity ward. When the cardiologist said "surgery" I cried so hard that she couldn't keep explaining and had to ask me to leave the room to calm down while she explained things to my husband. We were told she would have to have heart surgery when she was 2-3 years old. I was devastated at the thought of my little girl being cut open. We prayed fervently for her, and she was given a special priesthood blessing by my husband and another priesthood holder in our church.
When she was a year old we had to take her in to get an echocardiogram to see where things stood with her heart. The cardiologist told us that the holes had almost completely closed. (We were told her VSD might but her ASD was just too large to close on it's own.) We were shocked, relieved, and so full of gratitude to our Heavenly Father for healing our baby. This was such a blessing to us, and she never had to have surgery, and she's a strong, healthy, athletic, beautiful girl today with no signs of heart trouble.
Keep praying. If it is God's will, her ASD will close. If it is not God's will, then we have been blessed with wonderful medical technology that can help her. Whatever happens, put your faith in God, and all will be well.

Be very grateful that her problem can be corrected. The improvements made in the last decade in the cardiac surgery field are phenomenal. Just educate yourself as much as possible, choose your doctor and hospital carefully and pray for the strength to endure the next few years. You will have a harder time with this than Olivia. I watched my parents go though something similar with my youngest sister.

Hi, J.! My daughter had an ASD, several VSD's, and also a heart defect called Complete AV Canal Defect. She had to get open heart surgery when she was six months old. They weren't able to do a complete repair of everything I listed above, but they did repair a lot of it. We had a great surgeon at Texas Children's Hospital. We also now have a terrific cardiologist we see once a year as a follow up. I would be glad to share any information or answer any questions. Just ask away!