Our twins have Cerebral Palsy and both twins came home on oxygen.

twins who have cerebral palsy

Author:  Emilie Upson

Twins born at 28 weeks

Our journey with health issues for the twins started straight away. They were born at 28 weeks and weren’t breathing so were resuscitated, I didn’t get to see either twin until hours later.

NICU journey for twins born at 28 weeks

During their 12.5 week NICU stay we dealt with quite a number of things, blood transfusions, jaundice, feed intolerance, infections, CMV diagnosis for both twins, sepsis, a surgery for torsion of testes on twin 1 and laser eye surgery on both eyes to repair twin 2’s ROP.

However, the most prominent was the frequent, and never ending, apnoeas and bradycardic episodes which meant they stayed on oxygen.  They started with the ventilator, then CPAP for quite some time, then onto high-flo and finally we were onto lo-flo and I thought we were fine. But at 36 weeks they were both diagnosed as having Chronic Lung Disease and I was told they would probably come home on oxygen. 

Note from Twinfo: Please see HERE for a list of common NICU terms.

Bringing home twins on oxygen

We got through the hospital stay and they came home at 4 days corrected both on oxygen.

Having them at home on oxygen was tough, I couldn’t just pick up a baby and walk around, the tanks were massive and had to be pushed around on trolleys otherwise they had to be swapped to the smaller tanks and you had to carry the bag around as well as a baby.

Going out was hard, I had to pack extra tubing and extra tape because both twins had a habit of ripping the tubing off their face. But I was so glad to have them home that dealing with the oxygen was worth it.

CP and twins

They were on home oxygen 24/7 from discharge at 3 months old until they were 5 months old when they were weaned down to oxygen just at night until they were 7.5 months old.

Having them off oxygen was the best feeling in the world.

cerebral palsy in premature twins

Finding out our twins have Cerebral Palsy. 

Due to their prematurity we were seeing physios and paediatricians regularly. Everytime we saw them, they all said the same thing “they have high muscle tone”.

I’d heard this for at least 6 months before their new paediatrician informed me that high muscle tone meant Cerebral Palsy. I had no idea we were looking at a possible Cerebral Palsy diagnosis and it was definitely a shock to me.

At 11 months old we saw the Queensland Paediatric Rehabilitation Service at the Queensland Childrens Hospital and they agreed with all the physios and officially diagnosed the boys with Cerebral Palsy. They’ve been diagnosed with dystonic hemiplegia, which affects both boys muscle tone in their right arm and left leg.

At the time of diagnosis the boys weren’t sitting and weren’t crawling. They weren’t grabbing toys and playing with them and were generally very stiff. As much as I’d been prepared for a diagnosis, hearing them diagnose both twins was still hard.

I really struggled to come to terms with the fact our twins have Cerebral Palsy for such a long time even though I knew it was coming. 

Life today with our twins who have Cerebral Palsy. 

Since being diagnosed the boys have come along in leaps and strides.

They’ve been in therapy every two weeks and went from doing almost nothing to sitting, crawling and walking all within a month of each other at 15 months. They’re definitely doing better than anyone predicted and are currently only slightly delayed in gross and fine motor skills, but are still fairly delayed in speech and have sensory issues. 

Dealing with everything these past 2.5 years has definitely taught me a thing or two and I’m just so grateful I’ve been able to guide them on this journey.

twins born at 28 weeks with cerebral palsy

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