Christopher’s Journey.

I am booked in for the 3D scan on Wednesday 28/3 at 4pm and they want to concentrate on his cleft lip and his face.

Then on Thursday 5th at 11am, Chris, DH and I meet up again with the Paediatric Cardiologist for another ultrasound to look at his heart again.

I had another ultrasound today to see if Christopher has caught up in his dates. He still is 1.5 weeks behind, but is growing steadily.

They didn’t find anything else wrong with him (thank goodness), but they did confirm all that they had previously picked up.

We got to see Chris’ hands open and close and now have two very cute pics of his left and right hand.

His next cardiac ultrasound, should be in the next week or so.

We are being booked in sometime in the next 2 weeks for a 3D scan to concentrate on his face and cleft lip.

We ended up being 1 hour late for my OB appointment. Blood pressure was normal 125/70 and it looks like we are still heading for a c-sect at 38 weeks.

I have to have a Growth scan next Wednesday, to see how Christopher is doing as he was about 2 weeks behind at my last scan. I have always been told that I will be induced at 38 weeks, but if he is still on the small side my OB, wants to let him bake a little longer. When my OB measure me with a tape measure, he said I was on par with my dates.

Chris has been really active too, lots of kicks, punches and somersaults, sometimes it feels almost continuous, but its very reassuring to have so much activity, especially with all his problems.

My Blood sugar is all under control which is great - so that is one less thing I have to worry about.

I have put on 10.4kgs in total, which I don’t think is too bad. I am still wearing my normal clothes, I just wear a belly belt with my trousers, more for comfort than anything else, though Greg tells me continuously how “huge” I am!

Got back from my OB check up with Dr. S. S. today. We listened to Christopher’s heartbeat, which as always sounded nice and strong. He also felt around my tummy to see where my uterus started and finished, and used a tape measure to make sure that I am within my dates (apparently I am). I am hovering at the lower end of a healthy Iron Level of 113 (110 is the cut-off), so I was given the option of taking some Iron supplements, which I will, as I have been feeling extremely tired by the end of each day.

Dr S.S.  also gave me a referral back to the Ultrasound Clinic to have a growth scan done, as Chris measured about 10 days behind on the last one. He wants to make sure that he is growing well. Also if it works out that he is still a bit on the small side, then he hinted at the fact that Chris would likely stay in-utero longer and not arrive at 38 weeks as previously planned.

This growth scan is in addition to the second scan that I need to have with the Cardiologist (at 30 weeks) at the WCH. That scan will be to review his earlier diagnosis and (hopefully - fingers crossed) not find anything else wrong with Chris’s little heart.

Ventricular Septal Defect (VSD)

The most common heart defect (”Hole in the heart”). When small, such defects cause little in the way of problems and often “heal” (close) on their own. Blood flows from left ventricle to right ventricle at high pressure, often producing a loud “murmur” with each heart beat. The effect on heart function depends on the size of the defect, but may be very minor. Surgery may not be required, if the heart shows no evidence of “strain”.

Larger VSDs allow more blood to flow from the left ventricle to the right ventricle and lead to increase in pressure and flow in the lung circulation. This places significant strain on the heart and affected babies usually need surgical repair of the defect. An operation may be required in the first three to four months of life, though some defects, which are causing less trouble, may be left for a few years, in the hope that they may get smaller, only needing surgery if they remain large or are associated with other problems.

Transposition of the Great Arteries

The Aorta arises from the right ventricle and receives “blue” blood, whilst the Pulmonary Artery arises from the left ventricle. The baby becomes blue immediately after birth and needs urgent treatment. Survival depends on the ductus or the Foramen Ovale remaining open in the early days of life until treatment can be applied. The Foramen Ovale can be enlarged with a catheter procedure, called Balloon Septostomy, which is performed in the first few days of life. This involves a catheter with a balloon at the tip, which is passed from a leg vein until the balloon is in the left atrium (across the Foramen Ovale). The balloon is then inflated and the catheter is pulled back to the right atrium.

Early surgery is essential and involves the ” Arterial Switch Operation”, which is carried out in the first week or two of life and corrects the abnormality. The small coronary arteries, which feed the heart muscle with blood, need to be transferred as well as the two Great Arteries (Aorta and Pulmonary Artery).

Double Outlet Right Ventricle

In ‘Double Outlet Right Ventricle’ (DORV) the two Great Arteries (Aorta and Pulmonary Artery) both originate from the right ventricle and blood from the left ventricle passes across a VSD into the RV to reach the great arteries. The lung circulation is often exposed to very high pressure and increased blood flow (as with a large VSD). There are many different varieties of this abnormality.

Here is some information about Neo-natal Units and their different levels. Christopher is likely to start off in Level 3, and as he gets better and stronger, he will move down to Level 2 and then Level 1.

“Babies who spend time in a level 1 nursery are usually relatively well, just needing closer observation.
The caregiver carries out the required observations and gives guidance on feeding, bathing, and day to day care as well as helping parents become accustomed to handling their baby. Babies who have been very unwell in levels 2 and / or 3 of the nursery may spend some time in level 1 after they recover and are preparing to go home. ”

“A level 2 nursery caters for babies who are unwell and / or premature and need a fair degree of medical treatment, but who can breathe on their own. Most babies who need treatment in a newborn nursery will spend their time in a level 2 nursery.

Babies who spend time in a level 2 nursery are usually unwell and require treatment to administer medications, fluids and nourishment. They are likely to be placed into a humidicrib or incubator bed to help keep them warm, usually having monitors and / or drip machines fed through special openings in the crib.”

“A level 3 nursery caters for babies who are very unwell or very premature. They usually need constant medical attention and generally assistance to breathe artificially with machines. Babies who spend time in a level 3 nursery will often have many wires and tubes attached to them with monitors that can continually beep and flash around the baby, tracking their well being.”

Went to the Obstetrician today for a check up. He confirmed that the amnio results were all normal. I asked him what they actually tested for. They tested 24 cells, retrieved from the amniotic fluid they took from me, and grew them and looked at all the chromosomes of each cell. So that was comforting.

I hopped up on the bed and he listened to Christopher’s heart (a nice strong regular heartbeat was heard) and checked my blood pressure, which has been a a constant 120/80 which is great.

I also asked who Chris’ paediatrician would be, and although my OB was unable to tell me, he did say that it was very likely to Level 3 Registrar at the Women’s and Children’s Hospital, where I will give birth. More info to come on the neonatal unit.

I also now have to see the OB every fortnight and then weekly from the beginning of May until Chris is born at 38 weeks.

We received the final Amnio results this afternoon. They showed that Christopher’s Chromosomes are all normal and everything that they test for in an Amnio came back clear.

So now all we have to wait for is his birth and hope that nothing else pops up. Apart from that, all that he has wrong with him at the moment on an individual basis can be fixed with either surgical or non-invasive intervention.

You can’t imagine how much this information means to DH & I, meaning that we can finally get a restful nights sleep and eagerly wait on the arrival of Christopher

I was always going to have Chris at 38 weeks due to my Type II Diabetes. I had planned to have him at Ashford Hospital and try for a natural, drug free birth. Now he will be born at the Women’s and Children’s Hospital in North Adelaide, via an elective (planned) C-Section at 38 weeks.

Today we went to the OB and he advised that the preliminary (FISH) results for the amnio came back ok, meaning that they found no abnormalities (so far) in Chromosomes 13, 18 or 21 - which for us is good.

There is still a chance the remaining results of the amnio may come back unfavourably, but we have decided that for us, the initial results are good enough for us to get on with our lives and get back to enjoying this pregnancy.

We also visited a Genetic Counsellor and a Geneticist who went through all the things that we have been told. They asked us stacks of questions, about our feelings, our intentions and of course a pretty detailed family medical history. Obviously they were going to be there is we had to make the BIG decision of whether to terminate our pregnancy or not.

He still has a few things that will cause some minor hiccups in his life, especially in the first year and there maybe some other issues that we won’t know about until he is born.

Apart from that we have decided to call him Christopher Steven and look forward to the joys of mother/fatherhood at the end of May.

My friend Shaz just sent me this poem as she thought it may help after this last week’s events:

The Special Child—
The child, yet unborn, spoke with the Father.
“Lord, how will I survive in the world?My walk may be slower,
my speech hard to understand. I may look different.
What is to become of me? ”
The Lord replied to the child,
“My precious one, have no fear. I will give you exceptional parents.
They will love you because you are special, not in spite of it.
Though your path through life will be difficult,
your reward will be greater.
You have been blessed with a special ability to love,
and those whose lives you touch will be blessed
because you are special.”
- author unknown

We had no appointments yesterday and then the weekend came and all we could do is talk and discuss both worst and best case scenarios and hope that we were armed with enough information for the results that we were going to be presented with on Monday.

We were sent to have another ultrasound today at the Women’s and Children’s Hospital, with a paediatric cardiologist looking on and they concentrated on the heart and listened to the heart beating and looked at how all the blood flowed in and out of the heart and its valves and the right and left ventricles. Basically we were advised that Bean’s heart had 3 defects, all which could be corrected with Open Heart Surgery within the 6 months of life. This was the first positive thing that we had heard in the last 2 days and it filled us both with some cautious optimism.

The defects identified today were:

Ventricular Septal Defect (VSD)

Transposition of the Great Arteries

Double Outlet Right Ventricle

We had the amnio done today and opted to have the additional FISH test done, so we could get preliminary results within approx 48 hours. The FISH test looks for Trisomy 21 (Down Syndrome); Trisomy 18 and Trisomy 13 (both of which are “incompatible with life”). We have spent a lot of time on the internet searching for information on the above possibilities.

Was also given an Anti-D injection as the Amnio is considered a “sensitizing” event.

We had our Ultrasound scan today, which was because they couldn’t identify stuff with the baby the last time as Bean was too small. They picked up a few abnormalities - the ultrasound revealed that Bean had a cleft lip (with possible cleft palate); the right kidney was multi-cystic and would never function; club feet and a heart deformity. Basically these problems are not a problem on there own as they are all able to be fixed, but when you have 3 or 4 of them together it tends to point towards something more sinister. We were advised to have an amniocentesis, as soon as practical. We were booked in for the next day.

I don’t think I have ever cried so much in my life, not knowing what beholds the precious life I am carrying.