Support Group for People suffering from Heart Diseases

20 week scan and found out baby needs a double switch can anybody help me!

Okay this is terrible and we are all very sad. My daughter is very you ng and pregnant and after it was decided she wanted to keep the bbay and she would continue with uni etc locally we have found out the baby has major heart problems. The baby needs a double switch. We went for a scan last week and they saw everything and no hole but the week prior the consultants were sure they sawa vsd? (is that correct).

She wants give the bbay every chance of survival so here we are asking for help.

If anybody can help us it would be brillinat.

Thanks so much

I can attch a copy of the drs report exactly to what is going on. It is called congenitally corrected transportation of the geat arteries but both bits top and bottom need switching.

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Replies to This Discussion

Permalink Reply by Indian Heart Foundation Team on July 6, 2009 at 6:14pm

What kind of help you want?

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Permalink Reply by Lisa P on July 13, 2009 at 6:55am

Hello -
My son was also diagnosed 20 weeks in utero and last year he had his corrective surgery. There is an amazing discussion group on Yahoo that focuses on nothing but this rare condition and its been wonderful to connect with other parents of kids with this disorder. It sounds like you just need someone to connect with to start learning more - the LTGA discussion group is a great place to start. There are some phenomenally educated moms and dads out there. There are also a very elite group of surgeons around the US and in the UK that do this specific surgery - and do it well. Let me know if you'd like to connect further.

Lisa

PS - my son is doing very well one year later! He is now 22m old.

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Permalink Reply by Nicola Jane Garbutt on July 13, 2009 at 12:14pm

hello there yes would love the link please and then could join the group as honestly at this momnet very scared. I am so gald your son is doing well. Before the operation what sort of life didyour son was he constantly in hospital or was he in and out or mostly at home. The only reason I ask is that I have a 4 months old little man myself and will need to arrnage back up when he needs to og in etc for my son to get Hopllie to the hospital. I also relise that every case is very different.

Thanks so much for taking time to reply to me. I do appreciate it very much!

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Permalink Reply by Lisa P on July 13, 2009 at 9:08pm

Nicola -
First, let me start with how my son did in utero. He was diagnosed with the ccTGA (also called LTGA), a large VSD (hole between his ventricles) and pulmonary stenosis (reduced bloodflow through his pulmonary artery). Our cardiologist monitored him closely from the time of diagnosis to the time of his birth with monthly echocardiograms and appointments and he did beautifully. We knew he was going to be a big kid, and we induced labor at 39 weeks. He did beautifully. Because of his pulmonary stenosis (which became pulmonary atresia - no blood flow through the pulmonary artery), we knew during pregnancy that he would need a little shunt placed (called a Blalock Taussig - or BT - shunt) a few days after his birth. He did very, very well with the surgery and came home seven days after his arrival into our world.

Grant had a very normal and full infancy and stayed very, very healthy. He did take some daily medications, but never once became short of breath or had any kind of delays. We knew that because the BT shunt was only a palliative measure, he would need his switch surgery somewhere around 9-18 months of age. When he was about five months old and his oxygen saturation levels started to go down a bit, our cardiologist recommended we start thinking about having the surgery later in the year.

It was at that time that we began researching surgeons and got on the books with a very respected, elite surgeon out of Stanford University later that summer. Grant did very well up until the surgery, had his surgery, stayed very strong and recovered well. Today, Grant is a very active, wild, smart toddler who gets into everything. He is a big, strong kid and we are thankful. He is on daily medication and has a pacemaker implanted in his abdomen, but other than that and a scar down his chest, you'd never know he ever had a problem.

Despite how well Grant is doing today, he will need follow up surgeries throughout life to replace his pacemaker, pacemaker lead wires, and the conduit that was placed in his heart. So, that means more open heart surgeries - which always carry risk. So, we take every day, every week, every month as a blessing and do what we can to remain very educated, ask a lot of questions, and stay vigilant all the time.

Now, of course as you mentioned, not all kids are the same. They all have different anatomy so they will all handle symptoms, medication and surgery differently. Some kids never need to be paced, some do. Some have a tough time with surgery, some don't. They are all so different, that's why I encourage you to start spending time out on the Yahoo discussion board. Everyone out there knows how the moms-to-be feel - very frightened. All of us who knew in utero felt the same way. Just keep in mind that you are very fortunate - many parents don't know until their child arrives.

Here is the url to the Yahoo Discussion Group for LTGA:
http://health.groups.yahoo.com/group/L-TGA/

Keep in mind that you will need to register and should get a pretty quick response. We welcome your arrival soon - I think you'll learn a lot!

Lisa

Nicola Jane Garbutt said:

hello there yes would love the link please and then could join the group as honestly at this momnet very scared. I am so gald your son is doing well. Before the operation what sort of life didyour son was he constantly in hospital or was he in and out or mostly at home. The only reason I ask is that I have a 4 months old little man myself and will need to arrnage back up when he needs to og in etc for my son to get Hopllie to the hospital. I also relise that every case is very different.

Thanks so much for taking time to reply to me. I do appreciate it very much!

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Permalink Reply by Lisa P on July 13, 2009 at 9:19pm

Nicola -
Lisa again! I know its very early still, but I seem to remember that there is a very well respected pediatric cardiothoracic surgeon in the UK (Birmingham Children's Hospital) named Dr. (Mr.?) Braun who routinely does the double switch operation. Here is a link to the Birmingham website:

http://www.bch.org.uk/

Talk to you soon -

Lisa

Nicola Jane Garbutt said:

hello there yes would love the link please and then could join the group as honestly at this momnet very scared. I am so gald your son is doing well. Before the operation what sort of life didyour son was he constantly in hospital or was he in and out or mostly at home. The only reason I ask is that I have a 4 months old little man myself and will need to arrnage back up when he needs to og in etc for my son to get Hopllie to the hospital. I also relise that every case is very different.

Thanks so much for taking time to reply to me. I do appreciate it very much!

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Permalink Reply by Indian Heart Foundation Team on July 14, 2009 at 6:46am

You can join this group at http://www.heartpatients.com/group/tga

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Permalink Reply by Nicola Jane Garbutt on July 16, 2009 at 2:21am

lisa just a quick message to say I will be joining the group asap but my daughter Hollie is hospital at the momnet as he has a high temp, blood in urine and she keeps collapsing. She has been daibetic since she was 8. I am so thankful for you to email all this information and appreciate it so much. Nicola

Lisa P said:

Nicola -
Lisa again! I know its very early still, but I seem to remember that there is a very well respected pediatric cardiothoracic surgeon in the UK (Birmingham Children's Hospital) named Dr. (Mr.?) Braun who routinely does the double switch operation. Here is a link to the Birmingham website:

http://www.bch.org.uk/

Talk to you soon -

Lisa

Nicola Jane Garbutt said:
hello there yes would love the link please and then could join the group as honestly at this momnet very scared. I am so gald your son is doing well. Before the operation what sort of life didyour son was he constantly in hospital or was he in and out or mostly at home. The only reason I ask is that I have a 4 months old little man myself and will need to arrnage back up when he needs to og in etc for my son to get Hopllie to the hospital. I also relise that every case is very different.

Thanks so much for taking time to reply to me. I do appreciate it very much!

▶ Reply

Permalink Reply by Lisa P on July 16, 2009 at 6:45am

Nicola -
Take your time. Focus on your own child first. It sounds like she needs you. Make sure she is doing okay - the information will still be there when you need it!

Kind regards -

Lisa

Nicola Jane Garbutt said:

lisa just a quick message to say I will be joining the group asap but my daughter Hollie is hospital at the momnet as he has a high temp, blood in urine and she keeps collapsing. She has been daibetic since she was 8. I am so thankful for you to email all this information and appreciate it so much. Nicola

Lisa P said:
Nicola -
Lisa again! I know its very early still, but I seem to remember that there is a very well respected pediatric cardiothoracic surgeon in the UK (Birmingham Children's Hospital) named Dr. (Mr.?) Braun who routinely does the double switch operation. Here is a link to the Birmingham website:

http://www.bch.org.uk/

Talk to you soon -

Lisa

Nicola Jane Garbutt said:
hello there yes would love the link please and then could join the group as honestly at this momnet very scared. I am so gald your son is doing well. Before the operation what sort of life didyour son was he constantly in hospital or was he in and out or mostly at home. The only reason I ask is that I have a 4 months old little man myself and will need to arrnage back up when he needs to og in etc for my son to get Hopllie to the hospital. I also relise that every case is very different.

Thanks so much for taking time to reply to me. I do appreciate it very much!

▶ Reply

Permalink Reply by zoe on August 28, 2009 at 10:33pm

Hello im Zoe i was born with dextro Transposition but the surery i had was very much like the double switch it's called the Senning's produre it involves putting a hole into the top artiums so that the blood flows the right way.
HOPE THIS helps
please fell free to add me

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Permalink Reply by carrie on September 25, 2009 at 11:08pm

Hi Nicole:

I actully just found this site. I realize this post is from July. Anyway, I just think you should know that not all kids with l-tga need the "double switch" surgery. Of ten people have this type of defect their whole lives and don't even know it until they are adults. The severity of the defect varies tremendously. I have a 12 y/0 son with l-tga who has never had any surgeries. He is monitored by a cardiologist every 6 months, but to date is well and lives a very normal life as a 7th grader. He does have asthma also. The surgery has some very serious risks, so I think it is best to explore all options. We decided against the surgery, but it is a very difficult decision. I read a post once about a child who had the double switch surgery as an infant and had some problems afterward. The mom was very angry because apparently she was never told that waiting was an option. Carrie