Info on Christopher’s Heart Defects

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.

Neo-natal Unit – Levels 1, 2 & 3.

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.”

OB Check Up

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.

Week 25 – 26

Your baby measures about 33 cm (or 13.2 inches) and weighs about 800 grams (or 1lb 12 oz). Their eyelids are no longer fused so they can now open them and even blink! It is possible for your baby to respond to bright light (such as shining a torch through the woman’s belly). Newborn babies have vision that is perfectly focussed from about 20 to 30 cm (usually as far away as the face of the person holding them!)

Your baby can now recognise your voice and be noticeably calmed by it (observed by their heart rate slowing). They can also recognise your partner’s voice and different types of music.

Your baby’s movements are generally more regular now and they may physically respond to you if you press on parts of their protruding feet, bottom or hands.

Belly Pic – 25 Weeks

25 Week Belly Pic

Update on Christopher

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 smile.gif

sm_banana.gif elefant.sml.gif yahoo.gif sm_banana.gif elefant.sml.gif yahoo.gif sm_banana.gif elefant.sml.gif yahoo.gif sm_banana.gif

Giving Birth

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.

FISH Results

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.

Special Poem

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

The Weekend

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.

Week 23 – 24

Your baby has grown to be about 28 cm long (or 11.2 inches) and approximately 600 grams in weight (or 1 lb 5 oz).

Your baby now has definite sleep and wake patterns (although they may sleep up to 95% of the time) and now have REM (or rapid eye movement), which indicates they may be dreaming!

Your baby can now rotate their head and could experience hiccups. Hiccups are caused by the sudden, irregular contractions of their immature diaphragm (the muscle that supports their lungs) and while they may be capable of sporadic hiccoughs as early as 12 weeks gestation, they are generally stronger and more rhythmic by this stage. Some unborn babies hiccup quite frequently. This may be sensed by the mother as small, regular ‘jumps’ in their belly every now and then for short periods of time.
Your baby is now covered with a thick layer of white vernix cream to protect their skin in their watery environment and they now have sweat glands. A fine layer of fat is now forming between their muscle tissues and skin. This covers their blood vessels and makes their complexion look less translucent.

Ultrasound Scan with Paediatric Cardiologist

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 first 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