My name is Peter Murphy and I grew up in a small town called Carver which is located near Cape Cod, Massachusetts. I met my wife Susan in 2005 at the biotechnology company in Cambridge where we both worked. She grew up in Marshfield, MA but moved to Carver when she was in high school.
Despite knowing my father, who was the boy’s gym teacher and playing basketball with my younger sister we didn’t really know each other. I introduced myself one day at our company’s fitness center and we started dating a few months later. She tells people we met years later so people don’t think we’re a high school couple!
We got engaged on Valentine’s Day in Aruba in February 2007 – I wasn’t sure she’d say yes because she’s a very strong and independent woman, but I guess I wore her down! We bought a house in a small town called Shirley located about 40 miles northwest of Boston and got married two months later in October 2007.
We spent the next few years working, traveling and enjoying life as a couple. We found out we were pregnant with our first child right before our company’s Christmas party in early January 2011. A few observant friends knew right away when they noticed Susan wasn’t drinking at the party!
When I found out we were having a son I was elated. I couldn’t wait to teach him to play baseball and do all the things a father dreams of with a son. We decided to name him Donovan after Susan’s father Donald, who sadly passed away before Susan was even born.
We would call him Donnie which was her father’s nickname. At the time we had no idea how different our story would be.
Complications before birth
Everything with my wife Susan’s pregnancy was “normal” up until 28 weeks when she had an ultrasound showing Donnie was extremely growth restricted. They did some additional monitoring for the next two weeks and the next ultrasound at 30 weeks showed irregular blood flow profile, which set off the first off many alarms.
They did not allow my wife to leave the hospital and would transfer her to Brigham & Women’s Hospital in Boston that day. Because we were convinced things would be OK, we hadn’t packed an emergency bag to keep with us. I had to drive home to pack some things for Susan, having a panic attack in the process not knowing what would happen to my unborn son.
When Susan arrived at the hospital the doctors said things looked a little better but would continue to monitor things with ultrasounds twice a day. Something was definitely wrong; one ultrasound would look not so good, the next one better, the next one a little different. They determined that the blood flow across the placenta was extremely irregular so they’d need to deliver him via emergency C-section.
Donovan was born at 30 weeks and 6 days on July 14, 2011. He was only 2 lbs 4 oz (1024 g). The staff said he should have been about 3.5 lbs for that gestational age so he was significantly smaller than he should have been.
“All we could do was hold him”
The next few months would be crazy to say the least. Susan would arrive at the hospital in the late morning (her maternity leave couldn’t be delayed for a preemie, so she was out of work) and I would head over after work.
We’d stay by his incubator/bedside for hours, doing whatever we could for him while the NICU nurses did the lion’s share. It took a few days before we were allowed to hold him.
For many weeks, holding him is all we could do and we were thankful. After a few weeks we could change his diaper and help with little things but mostly we just stayed there and talked to him.
As the weeks went by, Donnie wasn’t growing as much as he should have and he struggled with his oxygen saturation. He’d have many “spells” or desaturations that were alarming because prolonged lack of O2 can cause brain damage. Because of these spells, he wasn’t allowed to feed orally because he was at risk for aspiration.
At this point he was fed from a tube going into his stomach from his nose (NG for nasal gastric). We hated this because the tape used to secure the tube to his face tore his skin apart.
Unexpected meetings
One night we attended a training class on infant CPR in the hospital, something we’d need to complete in order to take him home. During the class my wife’s appendix ruptured and she needed emergency surgery to remove it; good thing we were in a hospital.
My mind wandered to the possibly losing my wife while my son was in the NICU. I think I lost a year of my life with the stress from that night but Susan’s surgery went well. After she went into surgery around midnight I went to the NICU to see Donovan since I had nowhere else to go.
That night I got to meet Karen – the night nurse who always insisted on taking care of him. We had heard the stories of the nurse who took care of him at night from the day staff. If Karen was assigned to another baby, she would switch so she could take care of Donovan because she loved him.
If it wasn’t for the appendix issue, I never would have met and thanked her for all she did, so at least some good came out of that night. Donovan has had many nurses and therapists in his life and we’re profoundly grateful to all of them.
“We owed him that”
The time went by at the Brigham & Women’s NICU for about two and a half months and then he was transferred to Children’s Hospital of Boston in early October. There he would undergo additional testing for his breathing and feeding issues.
After about a month of evaluation and many tests, we were faced with a choice: we could bring him home with a tracheostomy and feeding tube, or he would need to stay in a rehabilitation facility on high-flow oxygen until his breathing issues were resolved.
The thought of cutting a hole in our baby’s throat was horrifying but we had no idea how long his issues would last. We wanted him home and trusted in the expertise of the team at Children’s so we opted for the surgeries.
The days immediately following his surgery were very scary. He developed some type of infection and his O2 levels were crashing. We couldn’t understand – these surgeries were supposed to help him and now we were afraid we’d lose him.
I remember eating breakfast in a diner with Susan one morning and I finally broke down. I didn’t want him to die in a hospital. If he was going to die, I wanted to bring him home first. We owed him that.
After crying snot into my pancakes for a few minutes I composed myself and Susan reassured me he’d be ok.
Concentrating on getting Donovan home
Despite swelling up like a balloon from the antibiotics and looking completely unrecognizable, he did get better. He stayed at Children’s for about another month and was then transferred to a local rehab hospital.
That month felt the longest for us because he wasn’t receiving the same level of 1:1 care as in the NICUs and honestly, we were very concerned for his safety without having a nurse by his bedside at all times. I won’t mention the facility or any details but it did motivate us to do learn everything we needed to and get signed off on all of his care ASAP so we could get him home.
At that point we were very weary of hospitals so one night I made pics of us going on vacation to far off lands as a way to amuse myself!
Finding our new normal
Donovan finally came home on December 28 2012.
It was very scary at first because the medical supply company messed up all of our supplies, and we then had to acclimate to having nurses who we’d never met taking care of Donovan while we slept.
We also had to develop a “home routine” for his care which took a little while, but it was much better than being in the hospital. I’m very grateful for our employer who allowed us both to bank vacation time and take large chunks when he first came home.
After my vacation time was used up, I was very fortunate to take a leave of absence from work for his care. We were delusional that the trache would come out in a few months and things would be “normal” after that. Not quite.
I was able to return to work in January 2013 and we managed the chaos as best we could. We had home nursing but we used that for nights.
Donovan received tube feeds every three hours and needed 24/7 monitoring and suction. I managed his care during the weekdays while we had nurses almost every night so we could sleep.
“To see him playing in the sand and waves was amazing”
His trache was removed after 2 long years. I never thought it would have taken that long.
The stoma (the hole in his throat) stayed open for a while but was finally closed in March 2015. That was a huge milestone because it allowed us to take Donnie to the beach for the first time that summer. Before this, we couldn’t risk him getting sand in his throat with no way to remove it.
We were blessed with a healthy daughter, Emerson Rose in May 2014, and in July 2015 we got to take our first family vacation at the beach in Rhode Island.
It was far from a vacation with the amount of work involved with taking our circus on the road but to finally see him playing in the sand and in the waves was amazing.
Despite having his trache removed and throat closed, Donovan still struggles to this day with breathing issues. He is prone to croup which is very scary. He also has a habit of getting sick when I’m visiting friends or traveling for work which really stresses out Susan and leads to some very interesting phone calls.
Getting ready to eat on his own
Donovan’s feeding was more of a project.
After he received his trache and G-Tube surgery, any interest he had in oral feeding prior to that was gone. It took a very long time until he was ready to eat on his own.
For years we struggled with epic vomiting issues and overnight tube feedings, but through tireless work along with dedication from our nanny and home nurses, he started eating around four years old.
It took a while to build him up until he was taking all of his calories and then his medications by mouth, but he finally got his “Mic-Key Button” removed in January 2018.
Long-sought answers lead to more questions
Donovan’s “AcroD” diagnosis took quite a long time, but in another regard it came rather quick.
For years we had been focused on his other medical needs and issues as they were more immediate. We always knew there was a genetic component that summed up his general condition because being a preemie did not explain some of his other physical features.
For years we had been consumed with trying to get him enough calories to he would be able to grow. With his tube-feeding and vomiting, it was a constant struggle to get him to take in enough calories. But now he was eating like a champ but still wasn’t growing.
Despite being at Children’s for six years or more, his specialists there did not have many answers for us and full genome genetic testing had been rejected by our insurance.
We were recommended to Dr Christina Jacobsen, who specializes in Orthopedics but had related interests in endocrinology and genetics. She had recently seen another patient with Acrodysostosis a few months before, so when she met us she recognized what it may be.
The test came back positive for Acrodysostosis Type 1 (PRKAR1A mutation) and an additional blood test confirmed resistance to growth hormone. It seemed very surreal to be searching for answers for years and then have this doctor recognize it immediately – well done Dr J!
It felt good to finally have a diagnosis, but in other ways it made us worry more knowing that what he has can’t be treated. What will his future hold? Will he be able to live an independent life? What will happen to him as Susan and I grow old?
I’m sure many other AcroD families struggle with these same thoughts but that doesn’t make it any easier. Currently there are no plans by Donovan’s specialists to do anything new or different regarding his care, but hopefully having this diagnosis will give them other things to consider.
Currently we don’t know what his potential will be but through his medical treatments, speech therapy, PT, OT and ABA therapy we’re pushing him to become the best little man he can be.
Settling into school life
Donnie is currently in first grade in a sub-separate classroom due to his developmental delays and behavior issues. He loves school and because of his flaming red hair and personality, he’s pretty well known to staff and students at all levels.
He performs some activities around grade level like writing and comprehension, but struggles in some other areas. Our goal is to keep supporting him and push towards a goal of having him integrated with other students in a few years.
Early reports form his teachers is that he’s doing well and spending more time in the regular class which is a great sign. He is non-verbal so communication is challenging but he does use an AAC device at school and at home that has helped (Proloquo2Go on an iPad).
Being able to actively communicate and eliminating the behavioral outbursts will be key to getting him into a class with his peers full time. It is amazing to see him interact with his friends despite not being able to speak directly to them. He does use his AAC but it does seem like they understand some of his vocal approximations and mannerisms.
We haven’t had much time to assimilate to the AcroD community yet since he was just diagnosed a few months ago, but we hope our story will inspire others as we learn to navigate these new waters.
We don’t know what the future holds for Donovan. He’s faced more challenges than any child ever should during his seven years. He’s a strong little boy so we’re very confident he’ll continue to persevere, take on all the challenges he faces and keeps improving on his milestones.
We’re hoping with a little luck and a whole lot of work, he’ll be just fine.
Here are some other things about Donovan…
He is a very happy and affectionate boy. He loves to snuggle with mom and dad and give lots of hugs to his friends at school. He loves his sister Emerson (4) but they do get on each other’s nerves at times – to be expected ☺
He loves his two cats Tek and Trot (named after former Red Sox players). Sometimes he gets a little rough but has gotten much better over the years.
Because of his tracheostomy we never heard it for years, but he has the best laugh I could ever imagine. Also, he has a sick sense of humor because he thinks it’s funny to fart on his parents. I’ve told Susan that this is evidence that guys just think farts are funny and there’s no other explanation needed.
He loves to watch baseball with his dad. He’s never seen a real game in person but taking him to see the Red Sox is a future goal for us. I tell people he wanted to be rushed to Boston so he could be born right down the street from Fenway Park. He does participate in a special baseball program called the Miracle League. His first few games were rough but he got better each week. The people who organize this league are so supportive and amazing to give kids and families an opportunity to play a sport and be part of a team.
He loves long rides in my truck. Every time we start merging onto a highway he just screams and laughs. We take him on train rides as well – he just loves to see the world.
He enjoys swimming (with Puddle Jumpers) and listening to Jimmy Buffett music by our pool just like his dad. The pool was scary when he had the trache but now that his throat is closed he enjoys kicking all around and getting tossed in. Winters tend to be long and frustrating in New England so this makes for some great family time during the summer.
Comments