Blog no. 6 of Down & Beautiful – AVSD heart defect


Sometimes, real superheroes live in the hearts of small children fighting big battles ♡

As from the birth of Daenan we went to the AMC hospital in Amsterdam. It did not matter to us, because this hospital was as far away as the hospital in Almere center.
I remember that his first cardiologist was clicking with her fingers so that our baby would keep his focus. She wanted him to stay quiet, in other words she did not want him to cry or to move, in order to make a good heart film and ultra sound. But he was always restless.

Until  our first appointment with the cardiologist in the hospital in Lelystad. Our home town.
He was never this interested, easy and focused before. He was quiet on the lap of his father and was staring to the screen where is heart was monitord. He was listening to his heart beat. The cardiologist, with grey hair and a kind face, was giving compliments to him. He said: “This is fantastic. Amazing. You are doing wonderful. Your heart is looking really good.”

After the ultra sound, the cardiologist explained to us: “Good news! It appears that the big hole between the heart chambers has been closed. I do not hear that noise anymore, but only the sound that I suppose to hear of the holes in his atria.”

The doctors are still surprised that our son is doing so well with his heart condition. They thought he had to be operated when he was just three months old. From that moment, the operation was moved to the age of six monhs, one year, two years, three years and so on.

Please find below the experiences of other parents.

Donna Stallard Lee  We were told at birth my daughter would need surgery by about 4 months old. In 2 days time, 1 hole closed and the other got smaller. She is now 4 yrs old and just had a check up and ECHO and though there is still a very small hole, her cardiologist feels it will not need surgery.

Janet Neal We had the same thing God healed and closed them up no surgeries!!!

Marta Milos Tatomir Our son was born with 3 holes in his heart and they told us he will need a surgery probably right after birth (he was fine) or if possible to wait at the age of 6 months or so when he gets a bit stronger … after monitoring his heart occasionally we came to the point where two holes closed completely and at every ultrasound his biggest hole (VSD) is closing more and more and now at the age of 2 cardiologist says there will probably be no need for the surgery … we are very happy

Kelly Sue Magoon Megan had ASD when she was a baby. It closed on its own. No need for OHS

We still have to see the cardiologist every year, to monitor the differential pressure to his lungs. It could be that the holes will close over time. It would also be possible that an heart surgery is necessary in a couple of years. Daenan is four years old.

Nevertheless, Daenan has an energy level that’s bigger than both of his parents. An outsider wouldn’t know that he is an heart patient.

In June 2018, we will hear if the holes are smaller and/or the pressure in his lungs remained the same or things will be wurse.

On one hand, my husband and I hope that an heart surgery will never be needed, but on the other hand, we know that a lot of open heart surgeries, were done perfectly.

Description open heart surgery

Open-heart surgery is when the surgeon uses a heart-lung bypass machine.

  • An incision is made through the breastbone (sternum) while the child is under general anesthesia (the child is asleep and pain free).
  • Tubes are used to re-route the blood through a special pump called a heart-lung bypass machine. This machine adds oxygen to the blood and keeps the blood warm and moving through the rest of the body while the surgeon is repairing the heart.
  • Using the machine allows the heart to be stopped. Stopping the heart makes it possible to repair the heart muscle itself, the heart valves, or the blood vessels outside the heart. After the repair is done, the heart is started again, and the machine is removed. The breastbone and the skin incision are then closed.

For some heart defect repairs, the incision is made on the side of the chest, between the ribs. This is called a thoracotomy. It is sometimes called closed-heart surgery. This surgery may be done using special instruments and a camera.

Another way to fix defects in the heart is to insert small tubes into an artery in the leg and pass them up to the heart. Only some heart defects can be repaired this way.

The mortality rate is between 1 and 15% depending on the heart defect and which surgery is needed.




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