Oliver: Birth to 1 month

October 23 – November 22, 2015
The first month with my baby boy was a whirlwind, to say the least: his early birth, getting used to having a newborn at home, his diagnosis of SMA, and travelling to Boston to get him in the NURTURE clinical trial.

This post is for me to play catch-up!

Oct 24 – The day after Oliver was born, we left the hospital at 9:30 am. The L&D floor was very busy and short on rooms so they wanted us out of there as soon as possible.

Oct 25 – Home visit from Suki. Oliver was slightly jaundiced.

Oct 26 – Home visit from Suki. Oliver weighed 7 lb 8 oz. We gave him BioGaia probiotic drops, as recommended, to help with gas (he’d been struggling at night).

Oct 27 – Noticed that since starting the BioGaia, Oliver’s poops have been even more frequent and burning his bum!


October 27

November 1

Oct 28 – We went to Prenatal Nutrition and brought my mom. Decided to stop the probiotic drops and picked up Sudocrem to help heal his bum.

Oct 29 – Oliver was breastfeeding every 2 to 2.5 hours round the clock. Lots of wet diapers! Suki had the flu so home visit was rescheduled.

Oct 30 – Oliver turned 7 days old. We drove to CHEO and met with Claire (genetic counsellor) and geneticist. Oliver’s muscle tone seemed normal for a newborn. He had blood drawn for SMA testing and weighed 7 lb 12 oz.

Oct 31 – We didn’t do anything special for Halloween but did take some pictures of Oliver in a themed sleeper.


October 28

My mom stayed with us until November 2. I loved having her with us. She made delicious meals for us and changed lots of dirty diapers! She also finished crocheting a beautiful baby blanket and two hats for Oliver.

By the end of his first week, I switched to size 1 diapers rather than buying another box of NB. Some NB size onesies were starting to be too short, as well. Oliver slept the days away, only having a few alert moments. When awake, he would follow my voice with his eyes. At night, he woke every 2-3 hours to breastfeed and then he’d fall back to sleep. I was finally getting some shut-eye!


November 9

Nov 3 – Jordan from “Cole Creations” came all the way from Kingston to do two newborn photoshoots at my house–one for Oliver and one for my friend’s baby girl, Josebelle, who was born five days after my boy. Oliver was 11 days old.

Nov 4 – I had Oliver weighed at Prenatal Nutrition: 8 lb 5 oz.

Nov 10 – Oliver met his family physician, Dr K. He weighed 8 lb 14 oz and measured 21 inches long (same as at birth). Around this time I switched him into 0-3 month clothing and packed away all the NB outfits.

Nov 11 – Geneticist called in the evening to tell us that Oliver’s blood test results showed he had Spinal Muscular Atrophy (SMA).

Nov 12 – I emailed the coordinator for the NURTURE trial (in Boston, Massachusetts) and explained Oliver’s diagnosis and our interest in getting him into the presymptomatic newborn clinical trial for ISIS-SMNrx. Kellie replied right away and Jordan and I immediately FaceTimed with her and Dr Swoboda. We agreed to Dr Swoboda’s suggestion that we get Oliver to her as soon as Monday so that she could assess him and, if he’s accepted, be given his first injection by the Thursday.

Nov 13 – We met with Dr M (neurologist) at CHEO. He examined Oliver and told us that he was displaying some signs already. He was 3 weeks old. I had noticed lessened movement in his arms and legs (only because I was really looking for it) and his inability to pull his head up. Dr M wrote us a prescription for a car bed.


November 2

November 6

Nov 15 – Arrived in Boston at 7:30 pm and settled in at the hotel. It took us two days to drive there.

Nov 16 – We met Kellie and Dr Swoboda and discussed what to expect from the clinical trial. Oliver went through a full day of screening, including an ECG, blood draw, motor function test, and CMAP. We had to wait for the blood work to come back before Oliver could officially be accepted into the study. The following day they had to repeat the blood draw due to the vials clotting.

Nov 18 – Oliver was accepted into the NURTURE trial!

Nov 19 – Procedure day! Oliver was given the drug ISIS-SMNrx intrathecally (administered through lumbar puncture). His back was numbed but of course he still got very upset. No sedation was needed. Jordan stayed with him the whole time while I pumped, since he had to miss a feeding session.


Two weeks old

Three weeks old

Although procedure days will be tough on our little guy, we know it’s the right thing to do. SMA is a terminal disease that takes almost everything away from a child. But this drug can delay or stop progression. Right now we hope for the little things, like being able to hold his head up and kick his legs. We have to make two more trips to Boston in the month of December for two more injections, then we will have a month reprieve.

SMA: Oliver’s diagnosis

In the evening of November 11th, at a couple days before he turned 3 weeks old, we received a phone call from the geneticist that Oliver was diagnosed by blood test with Spinal Muscular Atrophy. The test showed he was missing the SMN1 gene and had two back-up copies called SMN2. Most likely he would be a Type 1, like his big sister.

We had to make a decision very quickly.

While I was pregnant, someone from an SMA support group contacted me with information about a clinical trial called NURTURE, a phase two study sponsored by Biogen for presymptomatic newborns diagnosed by blood test. This particular study wasn’t available in Canada yet but the closest centre was in Boston, Massachusetts. (Phase three trials of the same drug on babies with symptoms have been ongoing for awhile with very good results.)


Oliver's first visit to meet family doctor

Oliver’s first visit to meet family doctor


The next day, after we had digested the news and decided that we were willing to do anything for our tiny baby who was quickly losing the use of his legs, I sent an email to the study coordinator at the Boston site. She replied fairly quickly, stating their interest in Oliver, and we FaceTimed with her and Dr Swoboda almost right away. I was surprised–and relieved–that they made contact so quickly.

After an hour long discussion with Dr Swoboda (neurologist, SMA specialist) about my pregnancies, both babies, and aspects of the trial, Jordan and I decided it was in Oliver’s best interest to get the drug ISIS-SMNrx.

The doctor told us that it was imperative for her to assess Oliver as soon as possible. We already had an appointment for him to see Dr M, neurologist, at CHEO on Friday. She said that if we could be in Boston by Sunday, she could asses him Monday, November 16th. If Oliver qualified, he would receive his first intrathecal injection by Thursday. Could we do it? With Jordan on parental leave, YES!

As of now we have already completed three trips to Massachusetts General Hospital for the NURTURE study. After two injections, Oliver started to show more strength! By the time we arrived for his third on December 17th, Dr Swoboda was impressed with the progress he had made in the last two weeks.


Baby boy

In a short period of time Oliver’s disease had progressed rapidly. He couldn’t hold his head up or move his legs very much, and only used his forearms rather than his whole arm. With two doses of SMNrx under his belt he began holding his head up again, although for 5-10 seconds at a time, began moving his legs more, and lifts his whole arm up and keeps them held to his chest when rolled side to side. It’s such a huge difference and we are so happy he’s getting this drug!

Oliver’s next injection is at the end of January. Now that we are done travelling for a little while, I will try to write some updates about our precious baby boy who is 8 weeks old now!