Pulmonary Atresia with and IVS

Mirrhya - posted on 10/30/2012

Oh Sweetie, I am so sorry. I wish I had something to tell you. I have become an expert in my son's condition but know nothing about stuff like this in general. Not much help I know, but love and hugs from Canada.

Emma - posted on 10/30/2012

I'm really happy for all your babies that are fighting their heart problems. However my baby girl has been given no hope what do ever. I'm 21weeks pregnant today and I was told last week to consider termination, which I refused. My baby has atrioventricular septal defect unbalanced and pulmonary atresia. They say she can have an op if she had a pulmonary artery, but she does not. I'm so desperate for help and advice. Has anyone had a similar case where they had an op. please help, I need some hope. Xxxxemma

Karla - posted on 03/01/2012

Here is an update....Maia's Cartiologists got the results of her Holter (heart monitor) and is concerned. She shes there are signs that her heart is getting tierd and will need a valve replacement soon. Maia was put on Aterolol medication 2x a day. She re-scheduled her MRI for this Monday.

This was not a total suprise since we knew she would need other surgeries. Her former surgeon estimated she will need one when she is 10 and her former cartiologist estimated 5. She is 7 now, so we knew this time would come.

Has anyone else reached this point yet?

Karla - posted on 02/09/2012

Yesterday we went to Children's Hospital in Houston and loves it! Our new Cardiologist ran the usual tests (echo, ekg, and and chest X-ray). She also gave us a heart monitor that Maia has to wear for 24 hours. In June we are having the MRI to get more data. We are told she will n

need at least 2they more surgeries during het lifetime :(. Good luck yo you all. Thank you for sharing your stories. It helps to know we are not alone.

Anna - posted on 12/18/2011

Yes, my daughter has had a cardiac MRI done. It's less invasive than heart cath. Kids don't have to go completely under either like heart cath. It was done as a annual check up.

Lisa - posted on 12/16/2011

nope just Echo's and EKG's. I am going to ask our Cardiologist about MRI's? My Son is 5 almost 5 1/2 on the 23 of December is doing great :)

Karla - posted on 12/16/2011

Lucille Packard. we now live in san antion tx. my daughter is now 7 and doing great! THANK God! she has an appointment with her new Cardiologist in January. This will be her second time with this new dr. Last visit he suggested and MRI to get a better reading on how much backflow she has where her valve was repaired. He says we can get a better reading with an MRI than her bi yearly echocardiogram. I wonder if anyone of your children he had an MRI?

Anna - posted on 04/07/2011

Alice, you should definitely have hope! I've learned babies are more resilient than we give them credit for...and you know what? You're resilient too.

I'll share the best lesson I learned in the NICU. Maybe it will help you too. While Summer was in the NICU a physical therapist visited her by the bedside. She offered to teach me baby massage. She said that in the midst of all the "life saving" activities that were happening to Summer, I should stop and consider that even though the "life saving" stuff was miraculous, it was also considered negative touch. As Summer's mom, I could be an active participant in teaching Summer about "love/positive touch" through baby massage. You as a new parents play a critical role in the care of your baby even though the doctors and nurses will be prepping your baby for his/her first surgery. Only you can teach them about unconditional love, soft tender touch, a soothing lullaby. Doctors diagnos and prescribe...nurses and staff carry out the doctors orders but HEALING is done in the arms of the parents. And if you can't hold your baby, you can provide a healing experience through massage, story telling, songs, breast milk...the list goes on.

Try not to worry too much-worry is negative touch. Your baby is in good medical hands I'm sure of it. Focus as much of your energy in the art of healing your baby as only a loving parent can do.

FYI - studies have shown that the more preemies are held after birth, the shorter the hospital stay. I'd like to think the same is true for all sick children. ;-)
Anna

Alice - posted on 04/06/2011

Thanks a lot Anna!! I am so happy for you and your family. I feel reassured reading positive stories like yours. I am so scared, unsure and dreading every anatomy scan wondering what is next? We are told baby would have its first op in between Day 2-7 and the next one when it is 3 months old while the last when she or he turns 5 years. I am so scared, all the worst scenario keep playing in my mind & sometimes I feel I would have preferred not knowing my child's condition. But reading the posts out here gives me hope.
Alice
Alice.

Anna - posted on 04/04/2011

Hi Alice,
Summer is turning 5 next week! She is doing fantastic from a cardiac standpoint. We just had a follow-up last tuesday. When people first meet Summer, they are surprised to learn she has a heart problem. As her parents, we're really amazed with the transformation post Fontan. She has a ton more energy (still less than peers but not by much) and she's only getting stronger with every passing day. To learn more about Summer's experience you can visit our carepage at Summertimes. www.carepages.com and then search for Summertimes.

I remember when we first got the diagnosis and being told the "worst case scenario." It was devastating. I'm not going to lie, if the 3 stage pallative treatment/surgery (BT, Glenn, Fontan) is the recommended course for your baby, it is an all encompassing venture. HOWEVER, post Fontan for us has been nothing short of miraculous. Pre Fontan - Summer's heart was always top of mind. Post Fontan, we think about "normal" kid stuff FIRST and heart is second.

If you are questioning your ability to parent a special needs baby...consider this. Summer was my first child. As a result of her heart defect, we had a TON of medical support to make sure she got the care she needed. The nurses, specialists and doctors trained my husband, pediatrician, and myself until we felt overly prepared for all types of situations. Fast forward 4 years and I have a 2nd daughter named Cordelia. She was born totally healthy. I brought her home and wondered "there is no way new moms are fully prepared to take their 1st baby home after 3 days." Summer is my easy baby because of the intense support system I had post delivery. Cordelia is 10times harder to care for (way more demanding) even though she was born healthy.

I hate to say that there are benefits to a diagnosis like PA/IVS but there is one key benefit. Summer and the family have learned what's really important in life. When asked what she was thankful for in preschool after the thanksgiving holiday, she replied "my mama." And that was AFTER hearing her classmates say "i'm thankful for turkey, or getting a new toy from their grandparents, or not having to go to school." It doesn't begin or end on Thanksgiving either. Summer comes up with sweet stuff like that every day.

If you have more questions, feel free to contact me directly.
Anna

Alice - posted on 04/04/2011

How is your Daughter doing AJ? I am expecting my first child and baby is diagnosed prenatally with PA/IVS. Baby has severe case of PA/IVS. So just wondering.

Anna - posted on 03/31/2010

Hey Lisa,
We're neighbors. My daughter was born with PA/IVS and her docs at Children's Hospital Oakland decided single ventricle was the best route - BT Shunt, Glenn, and we just finished with the fontan. She's pretty severe but there are other children with the same diagnosis who aren't as severe that have different treatments. The surgery practice at Packard also does surgeries at Children's. Dr. Reinhartz was the primary surgeon for my daughter's BT and Glenn with Hanley assisting. Both excellent surgeons - your son is in good hands.

Mirrhya - posted on 03/23/2010

Hey Katrina, where abouts do you live. I am also from Canada. My LO has pulmonary atresia with a small rt ventricle. He is 16 months and is doing really well. My son had his glenn at 6 mo. Your baby had it when he was pretty little huh?

Katrina - posted on 03/15/2010

My son Jacob (5mos) has Pulmonary Atresia. It's one of many of his heart anomalies. At 6 days old he had a left BT Shunt, and we've just come home from Edmonton AB where he had a glenn shunt. They wanted to fix his pulmonary vessels, but couldn't. Hopefully they will be fine until the fontan when they can fix them.

Lisa - posted on 03/09/2010

I was told he may need a valve after 10 years may not till 30. Just have to wait and see. He is doing great now.

Mary - posted on 03/06/2010

my daughter was diagnosed with pulmonary artresia and TOF. She had bt shunt shortly after birth and "full" repair at 8 months. She still does not have a pulmonary valve. She has done excellent and is 13 years old. She will probably have surgery in next year or so to have valve put in. The right side of her heart is enlarged, but not dangerously so. Will your child be having more surgeries?

Lisa - posted on 02/28/2010

We are being seen at Lucile Packard Children's Hospital (Standford) in Palo Alto California.

Gemma - posted on 02/28/2010

hi my daughter was originally diagnosed with this as well as tricuspid atresia, vsd, asd and had a bt shunt fitted at 5 days old and her pulmonary valve balloned at 14 days old. she went in2 heart failure at 3 months as the pulmonary opened causeing too much blood everywere. she had the shunt banded. she is 3 in may and in january she had a glenn shunt fitted. she is doing really well. what hospital r u being seen at? rosie goes to glenfield in leicester! hope ur little one is doing ok gemax

Breeanna - posted on 02/26/2010

My baby girl has Pulmonary Atresia IVS. They also consider it hypoplastic right heart syndrome. She has had a BT Shunt, and she is actually on the waiting list for a new heart. She has sinusoids in her coronary arteries. Tell me about your child!

Lisa - posted on 02/25/2010

Has she had to have any surgeries?

Bobbi - posted on 02/02/2010

My daughter has Pulmonary Aresia and Tricuspid Atresia.