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A mother's brave story: "My identical twins both suffered strokes before birth."

Did you know unborn babies can have strokes? No? We didn’t either, that was until we were told our identical twins had both suffered strokes before birth.

Toni and I had been together for two years when we decided we would like to have children.

Being in a same sex relationship we had to ring around and find an IVF specialist who was comfortable with our relationship and would agree to help us become mothers.

I was originally from the Sunshine Coast and same sex relationships weren’t an issue, however, Toni was from Moura, a mining town in Central Queensland and the idea of two females becoming parents wasn’t exactly welcomed.

We found our IVF specialist in Brisbane and amazingly, our first ever attempt of IVF resulted in identical twins. Toni and I couldn’t believe our luck.

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We were blessed to be carrying identical twins with only 1 placenta, this is uncommon, particularly with IVF as the embryos had to implant and split within 3 days. The laws have recently changed in Australia and now IVF consultants have to implant the embryos after 3-5 days of gestation as most embryos have split before then so the odds of having identical twins are very reduced.

I now had a “high risk pregnancy” and because we lived in a mining town we had to travel a four hour round trip three out of four weeks of the month to have an ultrasound to keep an eye on the progress of the twins.

At 28 weeks I was no longer able to stay in my home town and Rockhampton would not be able to look after the twins when they were born so I was told to stay no further north of Brisbane than the Sunshine Coast.

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From 28 weeks I was having weekly scans to check on their progress. At 30 weeks Twin 2 was behind Twin 1 in growth and there was talk of splitting my placenta, however, scans proved this would not be a possibility.

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At 34+5 weeks gestation on April Fools Day our beautiful babies arrived via emergency C Section.

Unfortunately Twin 1 was not strong enough and I was not able to even look at him before he was taken away and taken straight to intensive care. Twin 2 was a little stronger and I was able to look at him for around 30 seconds before he was taken to intensive care too.

The boys spent the next 3&1/2 weeks in intensive care and special care. Finally on day 6 we were allowed to have our first family cuddle and on April 17 (Janelle’s birthday) we were allowed to leave hospital and walked those precious babies proudly to our car.

We returned to Moura and life was pure bliss, busy, but perfect. We had our perfect boys and life was complete.

In early July 2013 Hudson was having screaming episodes, which seemed to last for around 12 hours. Then as quick as they came, they left. Life returned to normal.

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On 18 July 2013 Hudson had another episode early in the morning. His whole right side went limp and his eyes and head deviated to the left. We took him straight to the doctor who told us it was wind and it was nothing to worry about.

On 1 August 2013 we saw the boys paediatrician and she immediately told us Hudson had had a bleed and needed an urgent MRI. That day Hudson had an MRI and our lives changed forever.

We were told by the radiologist Hudson had suffered a massive stroke, and had lost over 75% of the left hemisphere of his brain. How could this be we thought? No one had picked this up, no family members or the local GP we went to.

The scans were sent to Brisbane and a haematologist found the damage was at least 4 months old, which meant the stroke had happened before Hudson’s birth.

We could not believe our precious baby boy had suffered a stroke. His and our lives had now changed forever! What did this all mean? How could this have happened? Why? These were all questions no one could answer for us.

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We were referred to a neurologist in Brisbane who confirmed Hudson had a massive stroke and she was not sure what the implications would be. In the mix of seeing what felt like 1000s of doctors we were told, “he has a lot of damage, expect Hudson to do nothing and whatever he does will be a miracle”.

The neurologist told us Hudson had a massive seizure and that’s what caused “Todd’s Palsy”, (the right sided weakness and his left deviation). Hudson had been suffering seizures on and off which we had no idea about.

As a result of Hudson’s stroke he was diagnosed with Right Hemiplegic Cerebral Palsy, Epilepsy, Hearing Impairment, Cortical Vision Impairment, Right Homonymous Hemianopsia (blind in the right side of both eyes), Global Developmental Delay and Non Verbal.

At 10 months of age Hudson was put on his first anticonvulsant drug. With every growth spurt Hudson seizures would get worse and on his 1st birthday he was flown to the Royal Children’s Hospital in Brisbane in “status”.

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After many more hospital admissions and different anticonvulsants, in January 2015 Hudson was admitted in the Lady Cilento Children’s Hospital for 9 weeks to try and control his seizures.

After many MRIs and EEGs the neurology team advised us the only way to try and control his seizures would be to perform a Left Functional Hemispherectomy. This meant disconnecting the entire left hemisphere of his brain.

By the end of March 2015 Hudson was on 9 anticonvulsants and still having over 250 seizures a day.

On 20 May 2015 we walked our precious baby boy into the theatre room, not knowing what the outcome would be.

Not one person in the operating theatre that day, (including the head surgeon) had every performed the surgery before, however, it was Hudson’s only option at a better life.

After what seemed like the longest 3&1/2 hours later we got a phone call to say Hudson’s surgery was complete and he was heading over to Intensive Care. Hudson was only meant to be in intensive care for 1 night however, Hudson had other ideas.

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Hudson ended up with a collapsed left lung, which resulted in pneumonia, and he required a blood transfusion too.

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After 6 days we returned to the ward. 48 hours after we were sent to the ward Hudson’s body shunt down. He was in two states of consciousness (awake and asleep) no one knew what was happening to him.

He had an emergency CT and emergency MRI and still we had no answers. I remember looking around his room at all the neurologists, neurosurgeons, intensive care specialists and I said to them “there’s probably over $1,000,000 in HECS Debt standing here looking at my child, how is it possible no one knows what is happening with my child?”.

After 48 hours to the minute Hudson snapped out of whatever it was and we had our precious boy back.

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Hudson was able to move his right side and sitting up again. He spent the next 6 weeks in rehab and then we were able to go home again.

In September 2015 it was discovered Hudson had hydrocephalus and was flown to Lady Cilento Children’s Hospital for a shunt to be inserted. Hudson had 6 blocked shunts in a matter of weeks. In December 2015 Hudson was found to have a suprasellar cyst in the middle of his brain. The neurosurgeons told us it could not be removed and they would instead need to put the tip of the shunt into the cyst to keep it draining.

From May 2015 to March 2016 Hudson had 15 brain surgeries. So that’s Hudson’s story.

Through all this time Toni and I have been telling Hudson’s specialists and therapists that we thought Mason may have Cerebral Palsy too.

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He is not able to speak yet and has a lot of similar traits to Hudson. Most of the time this was brushed off as nothing to worry about, or it was simply because Masons life had been so disrupted. In August this year after pushing for an MRI it was discovered Mason too has brain damage.

Mason has been diagnosed with Hypotonic Cerebral Palsy with a Bulbar Involvement meaning he may possibly never be able to talk.

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At the boys birth the obstetrician told us Janelle had a placental abruption. This is believed to have been the cause of both boys having brain damage.

The thought of having special needs children had never crossed our minds, and now, we have two special needs children.

We are happy to say Hudson and Mason are happy and healthy little 3 year old boys. They both attended a mainstream Kindy, physio, speech and occupational therapy and ECDP (special school lessons).

Hudson is now able to walk while we hold onto his left hand for stability and both boys have started using PODD to communicate.

I believe our story is a very unusual one and it needs to be shared with the world. A story that unborn babies can have strokes and can have a lot of twists and turns and adversity in life and still have a happy and healthy future.

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