The difference donor milk makes: Baby's Joseph's story
Joseph's mum Julia has generously shared their story and photos with us, and this touching story embodies the incredible difference donor milk makes. Joseph's story is both a testament to the powerful benefits of human milk and the importance of equitable distribution of donor milk for all babies with our Medical Relief Fund.
"My son Joseph was born at 37 weeks by emergency C-section on February 11th, 2023 at 8:05 am. We went to the hospital as I had noticed decreased movement. At birth, he went ten minutes without breathing before “spontaneous respirations” occurred. His Apgar score was 0 at 1 minute and 4 at 5 minutes. He had a Thompson encephalopathy score* of 8, and moderate to severe encephalopathy as per modified Sarnat** staging.
"From the lack of oxygen, he sustained a moderate to severe brain injury HIE (Hypoxic-Ischemic Encephalopathy). We were told that Joseph may not be able to breathe, see, hear, talk, eat, or walk on his own. Joseph was not expected to survive the night. He was transported to SickKids Hospital in Toronto for 72 hrs hypothermic treatment.
"He also had PPHN (persistent pulmonary hypertension in newborns), hypercalcemia, and swelling in the brain, lungs, and heart. Later he developed ‘subcutaneous fat necrosis’ on his upper back, shoulders, and back of arms as a complication of the therapeutic hypothermia treatment.
"On March 8th we were transferred to Level 2 NICU hospital as Joseph's condition was no longer “critical”. This hospital would work on resolving high blood sugars and wean him off the feeding tube. Before transfer, it was discovered that he had a blood clot near the heart, most likely from a PICC line; a choice that had to be made as he had so many medications intravenously they were running out of viable veins. Once he was transferred, the volume of milk being fed rapidly increased and my milk supply started to be less than what was required. I had been pumping, which was a lot of effort, but knowing how important mom's milk is for baby, especially a baby in Joseph’s condition, it was my mission to be able to supply him this; for Joseph, this was not food but medicine.
"We gave consent to use formula to make up the difference. We had noticed he was vomiting large amounts of his feedings and were told this was normal. Soon afterwards it was discovered that Joseph has a dairy allergy. As the NICU was not able to wean Joseph off the feeding tube, a discussion was had if we would work on feeding at home as well as finishing off his eight weeks of injections given twice daily as a treatment for the blood clot. We wanted Joseph home and agreed.
"Joseph could not keep down his feedings. He had a dairy allergy and was switched to Nutramigen formula which he would not drink through the bottle. He was not able to have breast milk, as we were making sure he would not consume any dairy. We would take shifts of up to 24 hours without sleep holding Joseph as upright as possible to keep down his formula while feeding through the NG tube (40-60 minutes duration) and 30 minutes after, leaving 30 minutes before his next feeding.
"We were informed that Joseph had not grown since the transfer to the hospital. He was now not gaining weight and the importance of us getting him home to try and have him thrive was ever present. Before discharge from the hospital, we put him on a soy-based formula and the vomiting was much less in volume, and he was able to gain some weight. Unfortunately, the stress and realization that Joseph’s life was still in jeopardy caused the loss of my milk supply almost instantly. It was two days before he came home and I had no more supply.
"On April 18th an assessment visit done at SickKids Hospital discovered that Joseph’s head circumference had not grown from birth. His weight and height put him at 1% on the infant growth chart and his head circumference at -5%. He had been home for two weeks with no growth. This was incredibly difficult as we were doing all we could for him. Knowing how important breastmilk is for all babies, especially babies in Joseph’s condition, I started inquiring about donor breastmilk. After multiple inquiries, it was clear that it is only available to NICU-hospitalized babies. After learning this I reached out to the Ontario Rogers Hixon Donor Milk Bank pleading with Joseph’s situation and that there must be an exception.
"They confirmed the same information but informed me that NorthernStar Mothers Milk Bank in Calgary may be able to assist as they are a community-based organization. This was a turning point for Joseph. The CEO of NorthernStar contacted us on Sunday, within twenty-four hours of the email being sent, recognizing the urgency of the situation. With a pediatrician’s letter stating this would benefit Joseph, Northern Star Milk Bank was able to apply their Medical Relief funding to reduce the cost of the milk. Without this funding, we would have been able to afford only a few weeks at best. We were fortunate enough to have supplied donor milk for many months, with this funding applied.
"In one week on the donor milk, there was no vomiting, NONE! This doesn’t seem like much but watching Joseph vomit, not spit up, was horrendous, especially knowing he needed to keep the food down. The NG tube would get dislodged (on very bad convulsions) which would require another hospital visit and X-ray to get it placed. It is heartbreaking to go through, and traumatic for all involved or witnessing.
"Within two weeks Joseph started to grow. The fastest growth was to his head circumference. He started to climb back onto the infant growth chart which is not expected for a baby in these circumstances. There were many miracles witnessed with Joseph, but this one came from a group of selfless Moms who donated their milk, people who donated money to the Medical Relief Fund, and a charity establishment with committed caring staff that allowed Joseph to have this recovery.
"In my heart, I know Joseph’s story would have been grim if he was not able to get this precious medicine. I am profoundly grateful, as outside of the hospitals, these people have saved Joseph’s life. Currently writing this on December 31st, 2023, we are on day 52 of Joseph’s 2nd NG tube removal trial. He is doing well on solid foods. We do not anticipate having to put the feeding tube back in. He is a happy active boy, that is hitting his developmental milestones. Thank you to all the people who made Joseph’s medicine available and his recovery possible, this is the greatest act of love.
"Where there is great love there are always miracles.
*Thompson encephalopathy score is a clinical score that can be used to assess the newborn with hypoxic-ischemic encephalopathy for the prognosis and their neurodevelopmental outcome. The aim of the study was to assess the role of Thompson score in predicting the early outcome of neonates with birth asphyxia.
** The modified Sarnat score, which was designed for infants ≥36 weeks' gestation, contains nine items that are grouped into six categories and coded for normal/mild, moderate, and severe encephalopathy with a minimum score of 1 and a maximum score of 6.