Saturday, April 3, 2010

Part One

Kai Adrian Michael Our Fighting Angel

This is the story of a very terrifying journey taken by two parents of a baby who several doctors had written off as a lost cause a life that would come to nothing but grief and heartache.

November/December 2007

As per our previous children Lisa was going to Camden hospital to go through the midwives clinic with this pregnancy but due to the fact that she was over 35 she had to go for a transnuchel scan which measures the level of fluid behind the baby’s neck which can indicate a genetic defect.

An appointment was made with Sydney Ultrasound for Women at Liverpool, during the scan we got to see all of bubs parts, his face and hands were very clear they even printed a lovely shot of his face, off to the waiting room to await the results.

We were called into the doctor’s office after a brief wait to be hit with some very terrifying and upsetting news; the scan had revealed a measurement of 6.3mm which was 3 times the normal size for this gestation period and an exomphalos which is an organ or bowel outside the baby.

The results of this gave a high risk of a genetic defect mainly DOWNS SYNDROME and EDWARDS SYNDROME the latter of the 2 is terminal. We were advised that the chances of these were 1in3 for Downs and 1in4 for Edwards which was quite hard to hear.

The doctor (if that was what she was) then advised us strongly that we should terminate the pregnancy as soon as possible as the outlook was very very grim. My initial reaction was 2in3 not Downs & 3in4 not Edwards so I’ll take my chances thanks very much. Lisa’s reaction was of sheer heartbreak to hear that the baby she so dearly wanted was to be taken away so soon. A phone call was made to a specialist doctor for us to discuss these results with, all we got out of that phone call was , hey you’ve already got 3 kids terminate this one and try again, I could have jumped down the phone and smacked that twat fair in the head his tone and attitude totally stunk but he did give us one option of further testing by them to which the blonde bimbo slid a price list under our noses I could have smacked her too they had zero empathy to our situation.

The following 12 to 24hrs were sheer hell for myself and Lisa as to what the hell were we going to do, our original decision was to go ahead with the termination and try again but we wanted to know the odds of this occurring again, so several phone calls were made to the twat specialist as to who we could contact regarding the chances. An appointment was made for the termination through our family doctor it was set for the following Monday.

We finally were given a name and number of a genetic councillor, Dr Alison Colley at Liverpool hospital and an appointment was made to meet with her, what happened in that meeting was one that changed our outlook completely. She offered further testing without the price list, but with what felt to be an honest feeling of wanting to help us make the correct and most informed decision, we had the weekend to decide which way to go.

Over that time it was hell trying to decide which way we go as the longer we left it the harder it was going to be to terminate as after 15 weeks Lisa would have to give birth to a deceased baby and we would have to name the child and have a funeral, not something we really wanted to do and the results from this testing were going to takes us past that time frame.

The decision to go ahead with further testing was agreed upon by the two of us as we could not live with ourselves if they tested the baby after termination, which they were going to do, that it come back negative for a genetic disorder and we had terminated a baby that may have only needed a surgical procedure to fix his exomphalos. An appointment was made with Dr Hollis at Liverpool Foetal Maternal unit was made for further ultrasounds and testing his initial reaction was the same as Dr Twats to terminate but also gave us the option of Transvillis sampling a procedure to test the chromosomes in the placenta. We decided to go ahead with these tests as uncomfortable as it was going to be for Lisa we needed to know exactly what was wrong genetically as to whether we terminate or not. The samples were taken and a very anxious week was had awaiting results.

We received a call from Dr Colley advising us that the results were in after a longer than expected waits, so off to Liverpool we went. The reason we had to wait a bit longer was that they had tested more samples than normal 90 cells in total were tested and of those 90, 80 came back normal while 10 of them showed a mismatch in chromosomes 3 & 4 where the top of 3 had broken and attached itself to the bottom of 4 and vice versa NO DEFECT IN 13 OR 18 = NO DOWNS SYNDROME OR EDWARDS SYNDROME GREAT NEWS TO OUR EARS. But what of these 3 & 4 abnormalities, well as Dr Colley put it, it may be a genetic throw back from one of us or just a mishap in the construction phase of the placenta, would it cause any defects not likely, so it was the right decision to make were going full steam ahead with this little fella, yes it’s a boy chromosome testing don’t make mistakes in that department. Lisa and I were both tested to see if it was a genetic throw back or not it wasn’t, Lisa and myself were both normal as far as genetics go. We were to be closely monitored during the term of the pregnancy at Liverpool foetal maternal unit every 3 weeks.

So into Christmas we go and what an interesting time that proved to be we arrived home after a visit to Liverpool to find a letter informing us that the house we were renting was going on the market and we would need to move, Lisa didn’t take this news well a sick baby, Christmas coming up fast and having to move not long into the new year and me starting a new job come the first week of the new year. With great help from our real estate a house was found just before Christmas and we were to move in come the first week of 2008. The week or so leading into Christmas were spent packing which in itself proved not so good as my mother had suffered a very mild stoke during that period which was only very mild but still it was enough to cause some great concern amongst the family. (She is fine now no further complications).

January 2008

The move into the new house went well with the removalist guys doing a great job all out and into the new place in one day. Our visits to Liverpool continued around the 20 week mark an ultrasound picked up a heart defect in the little fella what appeared to be a hole between the lower chambers this news was not taken well by either of us. Dr Hollis requested a meeting with us as I was not present at this ultrasound to discuss the viability of continuing with the pregnancy. During this meeting we were informed once again that the best we could do was to terminate as the outlook now was even worse given the 3 factors present. Those being HIGH TRANSNUCHEL FLUID, EXOMPHALOS, HEART DEFECT. I asked Dr Hollis can you tell me 100% that our baby will not survive to which he replied NO to which I then replied “well were not going to terminate now we are going to give this little fella every chance at life he deserves it is not up to us to decide his fate”. I think this shocked him a bit, but he was willing to continue through this with us and referred us to a cardiac specialist at The Children’s Hospital at Westmead, Dr Sholler and also arranged for an exomphalos specialist from Randwick Children’s Hospital to see us on our next visit to Liverpool.

The following visit with Dr Hollis and the specialist from Randwick was not real pleasant as he was of the opinion that the little fella would have to be born early as he would become stressed and a risk was present that it may rupture the exomphalos during birth at full term if he made it that far as it was now clear that the exomphalos contained his liver. We still remained confident that our little guy was still in there with a chance as he was growing and developing perfectly normal apart from a few things that weren’t quite right.

An appointment with cardiac specialist Dr Sholler at Westmead was made for 22weks to confirm the heart defect to which he did and also stated that it is operable but given the other problems it may not be successful another appointment was made for 26 weeks to allow bub to grow a bit so he could see a bit clearer what exactly was going on.

February/March 2008

Visits continued to Liverpool with a bit of trepidation as to what the hell are they gonna find next but nothing further was found on the little fella but with Lisa this time. They suddenly realized that Lisa had not been checked or booked into any clinic as yet and being such a difficult pregnancy Liverpool could not do it so arrangements were made to be booked into Westmead’s clinic for the remainder of the pregnancy this put an end to our visits to Liverpool and our journeys out to Westmead began.

Our first visit with the clinic nurses at Westmead seen us put into the highest risk bracket for pregnancy’s there is and we were immediately referred to a high risk obstetrics specialist Dr Indika Alakahoon who would see us all the way thru the remaining duration of the pregnancy we became a blue star patient of hers which meant we were given top priority. Visits to Westmead continued every 2 weeks with ultrasounds closely monitoring the exomphalos and heart. Life at home continued to be fairly non eventful with no further hiccups although the stress and worry of what will happen come May growing. Dr Alakahoon was very confident that the little fella would make it full term and was very supportive throughout the entire time.

The follow up visit with Dr Sholler at 26 weeks confirmed a heart condition known as TETRALOGY OF FALLOT, which is, a hole in the lower chamber between the left and right chambers which allows oxygenated blood to mix with non oxygenated blood and a narrowing of the main artery that feeds the left lung. Both of which he seemed confident in repairing surgically, but as with nearly all the other doctors he questioned the viability of continuing the pregnancy given so many risk factors that were present, and the great risk of some other genetic abnormality that is usually associated with all of them but we told him we were going on, he was surprised I think but was willing to continue with us.

February also was a big highlight for me as IRON MAIDEN were finally touring Australia after 16yrs, it was going to be a big 2 weeks. Lisa and I both flew to Melbourne to see their first show and a huge global meet up but that’s another story yet to be written let’s just say it was 2 weeks well needed for both of us to have our minds elsewhere for a while was very relieving.

April 2008

As it grew closer to the little fellas due date our thoughts were never far from what the hell is gonna happen is the gonna live or die, will he a have a major genetic defect, is he gonna come early on his own, and were gonna be an hour away from Westmead. What are we gonna do if Lisa goes into labour while I’m at work another hour away from home but 2hrs away from the hospital our anxiety levels were at an all time high I think, but I was to learn later that yes they can go higher. We decided on his name Kai Adrian.

We were referred to Dr Shun a paediatric organ specialist and surgeon our appointment with him was made the same day we were to tour the children's hospital specifically GRACE WARD which is neonatal intensive care. The tour of GRACE WARD was very daunting seeing those sick tiny new born babies knowing, no hoping that our baby makes it there because if he does make it there we then know he has a chance.

The appointment with Dr Shun was very short but oh so devastating as his opinion was that if he made it full term and was born alive that his chances of survival were only 1 in 4, due the high risk of putting his liver back in and the complications that could arise from it. But 1 in 4 is better than none Lisa did not take this well as I feel the reality of our baby boy surviving had hit home and hard.

Visits to Westmead become a weekly event and on one of those visits a drop in his heart trace was found and it was decided that Lisa was to visit 3 times a week for close heart monitoring for the duration of the pregnancy so, Tuesday was heart monitoring and general checks with Dr Alakahoon, Friday was heart monitoring and ultrasounds and Sunday was a short day with just a heart monitoring done. All heart monitoring sessions showed no further complications.

It was discussed with Dr Alakahoon the prospect of admitting Lisa to hospital a few weeks earlier just in case Kai decided for himself that it was time to meet the world and that we would not make it to the hospital on time it was decided that Lisa was to be admitted to Westmead hospitals women’s health ward at 38 weeks with a c/section planned for the 27th of May only 1 day short of 40weeks hopefully that would give Kai the best shot at survival.


  1. Hello..My name is Kari Adams...I'm 16 weeks pregnant and my baby has an omphalocele. It was found in a sonogram. I already got tested for chromosomal abnormalities and they told me it's a boy! Also that he is normal, not any chromosomal abnormalities...Now they scheduled me for an anatomy ultrasound that will be performed at 18 weeks. They suspect the baby has pentalogy of cantrell...they said that since the baby has a giant omphalocele, which includes liver, stomach and intestines, the chances of surviving will not being good for him. I have seen a few blogs were the babies had omphalocele and pentalogy of cantrell and they made it! I would like to know how your son is doing now. I want to give this baby a chance of fight for his life..I don't want to take this chance from him. But I also feel I have to be realistic..Thanks for your blog...It made my cry :) specially the part of the Catherine nurses, I really believe that was a sign from her...I have had dreams that my baby will be ok..I feel I should follow that..

  2. Hi Kari,
    I hope my blog has helped you, Kai is doing really well now totally normal all development stages are up to where they should be. Please give your little man every chance he deserves. It was a very long and rough journey to get to where we are today but it was worth every minute to have Kai with us. I wish you and your family all the very best for your journey, please keep posting and updating on your little mans progress, and yes ALWAYS follow your dreams.

  3. Heartbreaking and uplifting at the same time. A wonderful journal Michael. I'm looking forward to reading the next chapter. We got in contact a few months after Kai was born, and I didn't pick up on what his original condition was. Will you make sure I get a little reminder when you post again? I'd hate to miss it. Hugs to you and your family from Ina

  4. Ina, Thank you it has taken me a while to write this I am currently working on the rest now (going be a while),did you read all 4 parts? I will certainly let you know when I update the blog, I would like to one day have this published as a book.

  5. Hello Michael! I just saw your response. I'm glad to hear that Kai is doing well! :) That makes me happy!
    I'm 31 weeks now! We picked the name Colin for my baby...He will have to fight a lot for his life..After a fetal MRI, the doctor saw he has a small CHE, diagragmatic hernia and some fluid around the left lung..they are talking about ECMO if he can't breathe well. We are just praying that he will not need the ECMO and that he will do well with just the ventilator. In 3 weeks (at week 34) the doctor will give me a date for a c-section. I will keep you posted. Please pray for us :) Blessings to you and your family

  6. * CDH, diaphragmatic hernia

  7. Hello Michael, my girlfriend and I are in a similar situation as you were five years ago. Our baby had a giant omphalocele the size of the stomach itself, and a possible Tetralogy of Fallot condition. The latter is too early to tell.
    I can see that your blog is nearly five years old and I was wondering how he is doing today?
    I am desperately seeking some success stories of children born with omphalocele and how they are doing some years down the line.
    Thanks in advance, Jørn