Heart Children

Another post asking people's experiences with Starship made me wonder how many other Heart Children parents are on Ohbaby....

and are any of you going to the Heart Children Auckland Family Day this Sunday?

My baby boy Roman had open heart surgery at Starship on the 25th July 2009.

There was several things since Roman was newborn that we had brought up with midwife, plunket & GP but no one was concerned with the issues and just waved them off like they were normal - I guess in the scheme of things they are just normal things but all together they pointed to the larger issue...these were sometimes he was wheezy sounding when breathing and sometimes had harder breathing, the back of his head since birth would sweat so much that his sheet would be wet and just before his operation it was really bad - his head & back would sweat heaps, he has always hated tummytime, he would cry and cry and his lips would go a blue/purple colour sometimes, and of course his lack of weight gain, he was only 5.10kg on Tuesday 21st July. For the first three months he did really well with gaining weight, but over the last couple of months it just stopped, he was still gaining weight but very slowly....

Plunket got really worried with his weight and I asked her to write a letter to my GP, as whenever I brought up the weight the GP wasn't worried as he was feeding well and was gaining although slowly. So when I took Roman to have his 5 months shots, I asked about the plunket letter and said again that I was worried about his weight etc, so she said to put my mind at rest she will order a chest xray for him and refer him to a paed, but her exact words were "but you have nothing to worry about him, look at him he is happy & healthy, if something was seriously wrong with him he would look like a sick baby..."

So after the GP we took him straight to Starship to have the chest xray done, took a looonnnggg time to get done, we were in the waiting room for ages as they said that a starship doc in the emergency dept had to see us first to OK the xray even tho we had a referral, and wasn't till they actually saw one of his breathing attacks in the waiting room and then took his oxygen saturation level that things actually started happening (we were waiting from 2pm till about 6.20pm..), his oxygen level was low so they put the oxygen prongs on him, and we had the chest xray very soon after that. The xray showed an enlarged heart, but he needed more tests/scans to know what the problem was, so he was admitted into 23b - the childen's heart ward.

He had more tests & scans done over the next couple of days - on Thursday 23 July his diagnosis was confirmed - he has APW - Aorto Pulmonay Window. They said it is a very rare condition, and they have one case a year. As a result of the APW he also had Pulmonary Hypertension.  Bascially he had a large hole between his aorta and pulmonary artery which then pumped high pressured blood meant for the body into the lungs instead of the low pressured blood that the lungs should receive. So his heart and lungs were working overtime, thus why his heart was enlarged. 

So that is why he was sweating heaps - as his body was working sooo hard just to work.  Explains why even though he was feeding well and often he just wasn't gaining weight, as his body needed heaps of fuel to work, so wasn't much left over for growing.....

They did the operation on Saturday 25th July - and it went well. He spent 4 days in PICU, then 3 days in HDU, then 8 days in our ward room. While he was in PICU they did several more chest xray's and saw that he had developed Pneumonia in his lungs, and his left lung had collasped. His surgeon was very blunt and said he was a lucky boy, if he didn't have the operation when he did he would have died - as the Pneumonia would have been too much for his already overworked heart & lungs....

Normally APW is picked up earlier than 5 months old, but they said he shouldn't have any lasting damage to his lungs, he is on drugs that to help the hypertension and for the blood vessels in his lungs to dilate and unharden the lung muscle etc. 

But we are soooo lucky that his heart condition was finally picked up, we don't even want to think about the "what if" if it wasn't picked up just in the nick of time!!  So scary!!!!

He was such a brave little boy all the way through, just took it all in his stride and looking at his happy face again you wouldn't think he had gone through soo much just a couple of months ago!!

 

Hey there Angelina, You little man's story sounds scarily familiar to what happened with my little nephew, the same symptoms, sweating, sleeping, wheezing, etc everything, he was in and out of hospital so many times when he was little with what they thought was bronch..till he went in again at about 5 months and i told mum not to go home till she demanded a chest xray cos i knew it was more than that. and within 24hours he was up in starship. he too was on alot of meds and had apparently irreversible damage, a hugely enlarged heart with walls so thin they wouldn't even riska biopsy, mum brought him home to pass basically and was told he wouldn't see his 1st birthday... here we are 4 years later with a boy who is now nearly ready for school and who's heart miraculously healed itself. pretty amazing stuff.

I think I have intorduced myself to you previously, My young lady Paris has a valve problem, we are due back for review in a few weeks, hoping they do more xrays and echos as they have done none since first diagnosing it 3 yrs ago now.

Edited by mum2paris

Angelina wrote: There was several things since Roman was newborn that we had brought up with midwife, plunket & GP but no one was concerned with the issues and just waved them off like they were normal - I guess in the scheme of things they are just normal things but all together they pointed to the larger issue...these were sometimes he was wheezy sounding when breathing and sometimes had harder breathing, the back of his head since birth would sweat so much that his sheet would be wet and just before his operation it was really bad - his head & back would sweat heaps, he has always hated tummytime, he would cry and cry and his lips would go a blue/purple colour sometimes, and of course his lack of weight gain, he was only 5.10kg on Tuesday 21st July.

This sounds identical to us except Plunket and MW didn't think there was anything wrong - it was only when I took him to the GP after he'd been vomitting and difficult with feeding that she got concerned and referred to paeds. One week later, we were admitted urgently to Starship for surgery to repair aortic coarctation (narrowed aorta). Daniel's also got a bicuspid valve and is starting to develop subaortic stenosis. Also still has left ventricular hypertrophy which should have resolved by now. Having said that, there's no signs that the heart issues are affecting him.

Despite registering for HCNZ, I haven't heard anything from them.