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I am a Queenslander.
I am a Christian.
I am on the good side of mid 30’s.
I am a daughter, grand daughter, niece, sister, aunty, cousin, wife.
I am a home owner.
I am a pet owner.
I am a paper crafter.
I am a mother. But not just any mother. I am a Heart Mum.
This is my journey as a Heart Mum.
Dave and I were married in July 2003, and wanted to set ourselves up well enough before having children. We bought our first home, made some improvements to the house and gave our dog Sasha a new home. We started seriously talking about having a baby after our friends had their first child in October 2006. In May 2007 I became pregnant, and the first half of my pregnancy went pretty well.
- Our Wedding Day
Dave took Friday afternoon off and we went to the 19 week scan together, with the thought ‘everything will be fine’, and we hadn’t yet decided if we would find out the sex. During the scan we were told there was something wrong with Bub’s heart, and the Doctor tried to figure out the problem. By then Dave and I had burst into tears. We decided we would find out the sex of the baby, but it was inconclusive. We received the report, and were also referred to the Cardiologist. We went home in tears and got into bed and cried and prayed. We spent the weekend in shock and not really knowing what to do next.
We saw the Cardiologist about a week later at the Royal Brisbane Hospital where we had more of a diagnosis, but he wanted to scan me next time at the Mater Hospital. A few weeks later I had the scan at the Mater, and the diagnosis was Tetralogy of Fallot – in simpler terms means a hole in the heart, a faulty valve, aorta in a different position and thickening of the muscle around the faulty valve area. At this scan I found out we were having a boy.
During the process, we found out as much information as we could about the heart condition, and prepare ourselves mentally for the long haul ahead. It was during this time I made a deal with myself to enjoy the rest of my pregnancy, so I did.
In the last two months or so of pregnancy I suffered bad swelling, and also a rash which I thought was severe heat rash as it was over summer, but it was a pregnancy rash called Puppps (Pruritic urticarial papules and plaques of pregnancy). At my last Obstetrician appointment my blood pressure was up and together with the blood test it showed signs of pre eclampsia. Considering I had to be induced that night, any ideas of a birth plan went out the window. I just knew I had to go with what was best for myself and the baby. The following day after about 12 hours of induced labour the baby wasn’t progressing, so I had to have a caesarian, and welcomed our son Aiden into the world in February 2008.
During his first two months we spent all that time in hospital bar two weeks. His first open heart surgery was at 17 days old, then three days later he developed a wound infection. The rest of the time in hospital involved very strong IV antibiotics, daily wound dressing, and being rushed back into Theatre to clean the wound when it wasn’t healing and he took a turn for the worst. We had a very sick little boy, so it was so exciting for us when he smiled for the first time during his recovery.
Cuddles three days after surgery, when the infection appeared
One of his first proper smiles
Over the next few months he wasn’t thriving, and we could tell there were a few things not right with him. We saw many therapists – physiotherapist, occupational therapist, dietician, speech therapist for feeding difficulties, and his Cardiologist. We were explaining his symptoms, but no one could figure it out.
We found out the answer at the time of his next surgery at eight months old. He still had an infection around his heart and sternum which may have been from the original infection. The surgeons were surprised we kept him alive, and said some adults don’t recover from an infection like this. They were unable to go through with the planned surgery and during the next two months he was on very strong IV antibiotics, and had two more heart surgeries.
The following year 2009 was a big one for us. Aiden started the year by sleeping on his tummy, sleeping through the night, pushing up on his arms, sitting up by himself, and during the year crawling, pulling up to stand, and finally started taking his first few steps just before Christmas. It was the best Christmas present I could have asked for. Also that year, to help in planning his final surgery for a complete repair, he had a catheter procedure done.
The first time he stood by himself without holding on to something – October 2009
The final surgery was booked and cancelled three times before he had his heart repaired in March 2010, a month after his second birthday. The 1.5 cm hole in his heart was patched up, and he had a new valve inserted, and they also managed to keep his original valve but widened it. Thankfully this was a short hospital stay of just under two weeks, with no signs of infection.
The follow up to Aiden’s surgery was in February 2011, around the time of his third birthday. Our Cardiologist was looking at the heart scan and commented on how good the new valve looked. He said it’s the best valve he’s seen our surgeon do. It was at that moment it all came together for me. On our way home I was crying and finally felt complete as a mother.
Through all of his health issues, Aiden was diagnosed with Global Developmental Delay, and we’ve been though many, many hours of therapies at the hospital during 2008 to 2011. He now attends the Early Childhood Developmental Program which is a special Kindy, has Speech Therapy for his speech delay, and we’ve just linked in with Disability Services for more therapy. We’re now in the process of trying to figure out what to do for Prep next year.
Over the last five years I’ve learnt there are so many things in life you cannot change. You cannot change the fact your child has not formed properly in the womb, even if it’s from a genetic condition, medical condition a Mum may have suffered in pregnancy, or just something that has no explanation. You have no control over these things. But you can control the way you handle situations, with your mindset and attitude.
Even after hearing the devastating news of our child having a heart condition, I really enjoyed the rest of my pregnancy. I also had two lovely baby showers, one for friends and one for family, and was given some great advice from everyone.
Also I had a feeling that I wouldn’t have the birth I’d dreamed about. My Obstetrician said there were no problems with trying a natural delivery, but I ended up with an induction, epidural, and caesarian due to failure to progress. But through it all I was happy my son was delivered safely and received the medical attention he needed straight away.
There are many things from the first two months of Aiden’s life I would love to go back and change, but I can’t. This time was very difficult for me, especially when Aiden developed the infection and became very ill; when my husband took me out to lunch on Valentine’s Day and I had to leave my baby at the hospital and I saw other Mum’s out at the shops with their babies, and I wished I had mine with me; and desperately wanting to go home and start our new life as a family.
I tried to deal with it all as best as I could and take each day as it came. I could have easily fallen into the depths of despair, but I needed to be strong for my child and be his advocate and complex care coordinator, to work with the medical team to work out the best ways to fulfill his needs. We also had a great support network of family, friends and our church communities supporting us and praying for us. Also on the ground we had the Family Support Officer from Heart Kids visiting twice a week with food and someone to talk to, and the lovely friends we’ve made of other parents and children on the ward with us. I really do feel the support from everyone and God answering prayers brought us through what was a very difficult few years.
When I think back to the first few years, I do break down and cry, but when I compose myself I realise there is so much to be thankful for. I am so thankful that Aiden is now a happy and healthy 4 ½ year old. He can walk, run and jump. His speech is improving and he can communicate well enough with us. I am very thankful for our Public Health System, where we didn’t have to pay for his hospitalizations, surgery, medications, medical staff or the many hours of therapy sessions. I am thankful for the wonderful medical staff who looked after him so very well. I am thankful that I haven’t had to return to work, but could stay at home and look after my son and take him to the numerous health appointments. I am so thankful that I still have my little boy who calls me Mummy. This has been such a character building time, and I am thankful that God has made me a much better person now than I was before.
My gorgeous boys
Excerpt from This is who I am by Third Day
This is who I am, oh, this is who I am
So take me and make me something so much more
This is who I am, oh, this is who I am
So change me and make me someone better than before
So, take me as I am
But please don’t leave me that way
‘Cause I know that You can
Make me better than I am today
Oh, better than today.
Heart Kids
Website http://heartkids.org.au/
Facebook http://www.facebook.com/HeartKidsAustralia
Cuppa for Heart Kids – Our Cuppa for HeartKids campaign is now running throughout August and September. This is a national fundraising campaign to support HeartKids in its work. It is a fun and easy activity where you can invite your friends, family, work colleagues to join you for a tea party and make a real difference in the fight against Childhood Heart Disease. To find out more, please visit the website.
Thank you for raising awareness of heart kids I have a heart baby unlike you our bub was not diagnosed til we rushed him to emergency at 6 weeks old he had surgery with complications and spent 7 weeks in hospital and a couple of weeks ago was diagnosed with shones syndrome a rare heart condition with 3 defects on the left side of the heart. He will need another surgery by the end of the year. I can’t thank the HeartKids organisation enough for their support through this time and only other parents of Heartkids can really understand the journey we travel.
Thanky, thank you for sharing your story! I am also a heart mum to a heart kid but our road seemed a little easier than you’d. Except we only found out at 2/12 months when our boy wasn’t thriving! Only 1 surgery was needed and he is perfectly healthy 4 year old:). But why I say thanks again is because my friends unborn baby has been diagnosed with the exact same condition . So I will be sure to pass on this blog to her so she can see your success story:). Well done to you and your family on getting through such a rough first few years and we love heart kids too
oh caro….you have me sobbing….with joy but with the tenderness shown by you parents and all of the family and your strength and faith in being the mother and wife that you have just shared with us….having known aiden since before birth….well we were invited to share the news as it happened i still havent had such a thorough understanding of this incredible journey….bless you and of course the little fella….thanks and love…desi
Hi Sharon, I’m so glad your little boy is doing well! Please send your friend my best wishes. I would be happy to let her know more detailed information about the condition and the surgery if she wants to talk. I can send you an email to pass on to her.
Thanks for sharing your story and raising awareness of CHD. I have been an avid follower if your blog for a while. I am always amazed when I read about the story of the person behind a blog or fb page etc. to find out they have similar circumstances to mine. My pregnancy was very similar go yours. My son was diagnosed with severe Ebsteins anomaly during my pregnancy, so I can understand what it is like to go through that scan and recieving devastating news. We didn’t know what was going to happen other than there was a possibility he could die in utero and if he didn’t it would be touch & go. We got to 35 weeks and he had to be delivered via emergency csection due to fetal hydrops. We were given hope when he was born that once he was stabilized we would fly to Melbourne for life saving surgery. Sadly he never stabilized and his body started to shut down. At 25 hours old I held him in my arms and watched him die. We left the hospital with empty arms and broken hearts, out lives forever changed by CHD. Many people are not aware that congenital heart defects is the biggest killer of children. It kills more children in Australia than childhood cancer does. Yet Heartkids, a not fit profit organization receives zero government funding. It’s a great organization to support. They helped me through my pregnancy and also through my grief.
Wishing you all the best with your blog, I look forward to reading it snd thanks again for sharing your story
Thanks for sharing Cindy. I’m so sorry your little boy didn’t make it. I’m Guest Admin/Blogger for the week. Thankfully Jen’s little boys are healthy
~ Carolyn
Hi Kathryn, I hope your little boy is doing well at the moment. Carolyn
Thank you Desi so much for your prayers and support for us. Love, Carolyn.
Hi Carolyn,
Thanks for sharing your at-times sad but inspiring story.
I’ve been blessed with two very healthy little girls and I often marvel at the strength that Mothers show when faced with these challenges!
Laura xx