OT: My daughter-born with a (several) congenital heart defect(s)

[dkp]

My wife gave birth to our third daughter, Sophia Lynn, on August 12. What a journey we have had since then! I am not one of the more frequent posters on this forum, but I am a pretty constant reader. For this reason I feel that I know many of you, and I follow your posts with great interest, but since I am still learning about this great hobby I don't have much in the way of technical knowledge that I could input on the forum. However, I would like for you to know a little bit about my life over the past few months. That being said, I am going to give you the short version...

Our daughter was originally diagnosed with Atrial Septum Defect (ASD). This is commonly referred to as a hole in the heart. There are several areas where this may occur. Sophia's is located in the wall (septum) between the upper two chambers of her heart, the atrium (approximately the lower third of the septum is gone). However, a third echocardiogram changed the diagnosis from ASD to Hypoplastic Left Heart Syndrome (HLHS). This is basically the underdevelopment, or hypoplasia, of the left ventricle, the main pumping chamber for the body. Due to the underdevelopment of this ventricle, the aorta is also hypoplastic, or has a smaller diameter than normal. Fortunately, a nurse heard a louder than normal murmur and contacted the pediatrician who, in turn, ordered the first echocardiogram. (There is quite a bit more story here...) If the nurse had not run one last set of vitals (for no apparent reason), we were going to be heading home and would have been talking about a very, very different set of circumstances. (When HLHS is undiagnosed the most common result is death at home).

Sophia was sent to Children's Hospital of Michigan where she would have a fourth echocardiogram performed. We then met with the Cardiologist from the hospital, after he had conferred with his colleages and arrived at a concensus. The options presented to us were: 1) Surgery 2) Transplantation 3) Make her comfortable and allow nature to run its course (a very short-term outcome is inevitable). Option #3 was very much on the table from the hospital's perspective. We elected for surgery. (Transplantation is generally only a course of action taken when surgery is not possible).

The surgery is called the Norwood Procedure, named after Dr. Norwood who pioneered this surgery. This is the most extensive surgery performed on the heart. At ten days of age, Sophia had the first of at least three heart surgeries. (The second will be at 4-6 months of age; the third at 18-24 months). It is difficult to describe, but I have a diagram from a Critical Care textbook that I will try to upload later. Here's an attempt to describe the surgery:

The Pulmonary artery comes straight up from the heart and forms a t, where the blood heads in two different directions. The Pulmonary artery is cut just above the point of insertion into the heart and just below the "t." The top cut is sutured shut. The Aorta is transected, or cut along it's length from the point of insertion at the heart to the Aortic arch. There are three or four branches or arteries out of the top of the Aortic arch. One of these goes straight up, then heads right, which is why blood pressure is taken in the right arm. This artery was removed from Sophia and the material was used to increase the diameter of the aorta. This material is used to not only increase the diameter of the aorta, but also attach the aorta to the base of the Pulmonary Artery.

Now you have the right ventricle pumping blood from through the former base of the Pulmonary Artery to the Aorta. However, at this point there is no Pulmonary bloodflow. So a shunt is placed from the Aorta to the Pulmonary Artery. Mortality is 1 out of 5 for this surgery.

We were in the hospital for a month. Sophia is now at home and on several medications. She takes most of her feedings (breastmilk) through a feeding tube that runs through her nose and into her stomach. She is very stable, although we have to be extremely careful so that she doesn't get sick. We have constant doctor appointments, nurse visits, occupational therapy (to help her take the bottle-this is a big issue for cardiac babies) but we thank God that we have her here with us. We really don't know what kind of a life she will lead as there just isn't much data available for these procedures yet. There are expectations that she will not be able to have children, that she will have diminished cardiovascular capabilities and that she will eventually require a heart transplant. However, the results for this surgery were vastly different a mere ten years ago. We remain thankful to God for every moment that we have had with her thus far. I am going to try to attach a picture and that diagram...bear with me!

We have set up a message board that contains much more information and pictures.

http://atrmb.atrcomputers.com/sophia

David

Just after birth: (purple flesh tones from congestive heart failure)

[SCOOTERDOG]

It is so much different when our children are ill then adults. They are fragile and unaware of what is happening to them. The good news is modern medicine has came a long way as you pointed out. Keep her close and love her long. My families prayers go out to you and yours. Keep your chin high and your faith deep.

Scooter

[Daddy Dee]

David,

I'm glad you have posted and know that I wouldn't be telling you

anything to say that this is most serious. You know that up close and

personal. I am thankful that Sophia has gotten such good care and has

the love of her mother and father surrounding her.

You guys keep hanging in there. We are thinking of all of you in our

prayers. You've got support and caring in this place.

[ranjith]

David,

I'm so sorry to hear about her condition, but on the brightside she is probably given the best care and love she can ask for. Hang in there, I'm sure things will get brighter.

Ranjith

[Champagne taste beer budget]

David,

I, too, am more of a reader than poster, but want to wish you, your wife, and especially Sophia the best of outcomes in this especially trying time. You seem to have a positive outlook, which I'm sure Sophia can sense, even if she doesn't know what that is yet. My prayers for all of you.

[IB Slammin]

David,

You, your wife, and your "little one" have been lifted up in prayer in my home tonight.

David and BB members: Never hesitate to ask, publicly or PM.

Terry

[dkp]

Thanks for the well wishes and prayers. They mean a lot.

I have never uploaded a picture onto the forum and have been having some difficulty getting my picture of her to insert from my hard drive. Help! (See my thread in the "website" forum).

***EDIT*** Got the pictures figured out... More coming.

This one is of her just after the surgery in the Pediatric ICU. You can just see the yellow iodine patch covering her chest (which is left open for 3-5 days following surgery).

David

[fini]

David,

Thanks for sharing. You're a good Dad! Best wishes, and keep in touch!

[Speedball]

Hi David,

The Doctors and Nurses in a childrens hospital are the most friendly I've ever met anywhere. I know because just spent 10 years working at our local childrens hospital.

[DrWho]

How's this?

[dkp]

And that is of her at home this week.

Thanks, DrWho.

[BS Button]

Hang in there, little bit. Our prayers are with you and yours.

[Speedball]

David,

She looks wide eyed and ready to rock and roll...[]

[SilverSport]

Good thoughts and prayers...[A]

Bill

[MrMcGoo]

I had a friend that had an atrial septal defect fixed. He was perfectly normal except for the scar on his chest. He played football in high school.

Open heart surgery is a minor miracle. Try to keep the faith.

Bill

[Piranha]

Your daughter and your entire family deserve the very best that life has to offer. Thanks for telling us about her and know that I am pulling for all of you.

[colterphoto1]

This story has touched all of our hearts out here in Klipsch-land. God bless your daughter and family. Sounds like she's been the receipient of a couple of miracles already, one being that astute nurse, the second being the recovery from major surgery. That second photo reveals a little angel. Prayers for a complete recovery and beautiful life ahead.

Michael

[IAmtnbikr]

What a cutie! []

We know a fellow Michiganite; Jared DeVries- who plays for the Lions, and is from where we live here in Iowa. He and his wife's youngest one I believe has a very similar condition, and they too were fortunate to have it caught right away. The little man has had about three surgeries so far, and just as you have said the future is uncertain. I would have to find out what doctor/hospital they have had the procedures done at. They have been strong throughout the entire ordeal, and a year ago we saw them at a wedding we attended for Jared's sister-in-law. He looked quite well, and they are optomistic as you seem to be too. Hang in there, medicine is making unbelievable advances! Our thoughts and prayers are with you.[]

[dkp]

Wow-thanks for all of the prayers and well-wishes. They are truly appreciated! I will keep you posted as we near her second surgery (Dec-Feb sometime).

Here is that file I promised:

Generally HLHS patients have the atrial septum defect (ASD). If they don't, the septum is generally removed to create one large upper chamber in the heart.

[J.4knee]

David,<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

Very sorry to read about Sophia's entry into the world with such a long road to travel. It just seems so incomprehensible that one so new and innocent is burdened with such a trial. Know we are all here for you and we are all pulling for Sophia. You and your family especially Sophia will be in our prayers. Keep the faith and keep you chin up. Thank you for sharing with us a view into your world. She is precious; keep God in you mind and heart. God bless.

R/Jim