A baby born with a cyst the size of a FOOTBALL under his arm – which left the limb at a 90 degree angle – has had it removed and can crawl for the first time.
Mum Christina DiMartino, 34, was told her unborn son, Matteo, had an abnormally large mass located across his chest and left arm – which covered up to 50 percent of his body – after going for a routine scan at 13 weeks.
The tot was found to have a rare lymphatic malformation – and medics warned he had just a nine percent chance of making it to birth.
First time parents Christina and her husband, Franco, 36, an electrician for the Long Island Railroad, decided not to terminate the pregnancy, but to give their little boy a chance and Matteo was born via emergency c-section on 7.17pm on 17th April 2019.
Matteo tipped the scales at 9lbs 3oz, but it’s thought 3lbs of that – one third of his body weight – was down to the huge cyst which covered his side up to his armpit and meant the newborn struggled to move his neck and head, couldn’t roll over, sit up, fit into a car seat or baby clothes. It also left him suffering from frequent skin infections.
At six months old, the little boy went under the knife under a team of specialist at Cohen Children’s Medical Center, New York, US, to have the cyst removed in October 2019.
He is now a happy 10-month-old with a bright future, but will need to be monitored as he grows older.
Christina, a special education science teacher, from Massapequa, Long Island, New York, US, said: “We are so proud of Matteo and all he’s been through.
“He’s defied all the odds to not only survive but to thrive.
“We knew he was going to be born with a huge cyst, but even we were surprised when we saw it for the first time.
“Despite all of the treatment and operations he’s been through, Matteo is such a happy baby.
“He is now meeting and surpassing milestones for his age. He’s now pulling himself up to stand, crawling, eating foods with his fingers and saying ‘mama’ – we couldn’t love him anymore if we tried.”
Christina and Franco were over-the-moon to discover they were expecting a baby.
She said: “It was an amazing moment as my husband, Franco, and I tried a long time to start a family and had suffered a recent loss.
“I found out that I was pregnant two days before Franco got a new job so it all seemed ‘meant to be’.
“I knew not to be too excited at first – until I was past the 12 week mark.
But the couple’s blissful bubble burst at 13-and-a-half weeks when Christina and Franco discovered there was something wrong with their baby at a routine scan.
Christina said: “I had gone to the doctor alone as it was Franco’s first day in his new job.
“I thought it would be fine because we had a scan the week before, but the sonographer left the room and told me to stay on the table with my bump out.
“About 20 minutes passed and I had a weird feeling that something was wrong, but I had just heard the baby’s heartbeat so I wasn’t sure.
“I was talking to Franco in my iWatch, laying on the table.
“I got up and wiped the jelly off my belly and went into the hall annoyed at the now 45-minute wait and asked if they had forgotten about me.
“Two doctors and the sonographer came back in.
“One doctor introduced herself and told me that the purpose of the nuchal scan was to see if the baby had signs of Down syndrome and that it showed no signs of this.
“As a teacher, I was familiar with the ‘starting the conversation off with something positive’ technique.
“She then told me that there was a cystic hygroma – now referred to a type of lymphatic malformation – on the baby.
“I thought: ‘A cyst? How bad can a cyst be? I guess the baby will have to get it removed?’
“But the doctor told me that it was a bit more complicated than that and showed me the scan.
“The cyst was already about the size of the baby’s head at this point – at 13-and-a-half weeks.
“It was located under his left arm, in the armpit region.
“I suppose they took so long coming in because they wanted to get all the facts straight before telling me.
“She informed me that the prognosis was not great and that the baby may terminate itself in-utero.
“She said there was approximately a nine percent chance the baby would make it, and there was a 75 percent chance that it would be a chromosomal disorder.”
Christina and Franco struggled to come to terms with the news.
She said: “It was crippling. It was absolutely the worst days of our lives and it was so hard trying to be calm and not stress for the baby.
“We knew how hard it was to conceive so we decided to stick it out because we would handle whatever God’s plan had set out for us.
“We had no idea what was going to happen.
“The doctor then presented me with my options which were termination or chorionic villus sampling – that would involve inserting a needle into the placenta to collect fluid which would diagnose a chromosomal abnormality or disorder.
“I ended up going back the next day to take this test. The initial results came back negative for a few main chromosomal disorders.
“The sample was sent in for further testing that took 30 days to all come back negative – normal. It was a good feeling.
“I knew with all these results that the chance of him being born healthy was good.”
As soon as Christina and Franco found out about their baby’s diagnosis, they started doing their research.
She said: “As soon as I got home, the Googling began. I researched and researched and researched some more.
“After looking into it, I felt worse seeing all the statistics. It was debilitating to say the least.
“I had one week of excitement of my pregnancy, and that was then on until the birth – it was sad. I actually felt sorry for myself.”
Christina and Franco had originally decided to keep the gender of their baby a surprise.
She said: “I didn’t want to know what we were having – mainly because I didn’t want to get too attached to the baby in case we suffered a loss again.
“At a scan, the sonographer asked me if I knew and I told her I was pretty sure the doctor gave me a hint it was a girl.
“She laughed and said: ‘Not according to this screen!’ and she showed me my baby’s anatomy.”
Christina was seen by high-risk specialists weekly at first.
She said: “I went every week to begin with, then twice a week, and finally after 32 weeks, I started going three times a week.
“I would have regular heart monitoring and scans.
“The cyst consistently grew. It started growing more rapidly than he was and became the size of his chest.
“His arm was also now involved and stuck in a 90 degree angle inside the womb.
“Though, each test came back in our favour – even the heart exam showed zero defects which surprised us all.
“At around 32 weeks they sent me to get a betamethasone injection just in case I delivered early the baby’s lungs would be more developed.”
Christina was then told she would need to have an emergency c-section.
She said: “I went into hospital and assumed it was just for observation, but the doctor told me I would have the baby that day because he thought he may have seen a little fluid in the baby’s cheeks. It turned out to be chubby cheeks!
“He aspirated some of the cyst’s fluid after the spinal tap and did this to make sure he would fit out of my belly. He drained 500ml of fluid.
“My baby boy, Matteo – which means ‘Gift of God’ – via emergency c-section at 7.17pm on 17th April 2019.
“I didn’t get to hold him. They whisked him out immediately for assessment and I only saw a glimpse of his little face on the way out the door.
“He was breathing on his own and surprised doctors that he needed no medical intervention. They were prepared with 24 nurses and nurses doctors in the delivery room.”
Despite knowing their little boy had a huge cyst, Christina and Franco were still shocked when they saw their newborn baby for the first time.
Christina said: “One thing we could not have prepared for was the open lesion on Matteo’s cyst.
“The open lesion was some weird skin material over an open wound on the cyst and no one can figure out how this lesion happened.
“It had deep tight wrinkles skin, all over the cyst as well, like a wrinkly weird-brain-like skin. It was huge!
“His arm was up and not extremely mobile.
“I was scared to say the least.
“It was such a shock to see the cyst in real life and was much bigger than the scans made it out to be. It was almost as if there were two chests connected to one another.”
Matteo remained in NICU for two weeks, before he was allowed home.
Christina said: I didn’t know what to do when it was time to leave the hospital.
“I had to hold my baby differently to most mums – ‘like a spatula’ I would say.
“Clothes couldn’t fit him. He had to eat at certain angles to make sure the weight of the cyst wouldn’t block his airway and I was scared.
“I was honestly terrified to love Matteo.
“It was the scariest feeling ever. Before long, his beautiful face made me succumb and my love grew.”
The family met with plastic surgeon, Dr. Rachel Rutolo, after Matteo was born.
Christina said: “I had come to know of her because during my extensive hours researching and had learned of her amazing work.
“I felt honoured when she walked in and wanted to be part of my surgical team.
“I knew that we needed a surgeon too who had experience in this rare field.
“We called the most prestigious hospitals around the country and I even reached out overseas.
“I joined lymphatic malformation support groups.
“After six other opinions and surgical teams of plastics, oncologists, general surgeons, vascular anomaly specialists, and interventional radiologists, I was led to Dr. Milton Waner.
“He is a world-renowned facial surgeon who has expertise in vascular malformations.
“He was the first doctor we met that had said they have seen something of this nature before.
“He said there was another case similar, though not as severe as Matteo’s that he’d worked on. I knew he had to be part of the team.
“In the meantime during my doctor hunt, Matteo had wound up getting some severe cellulitis and infections.
“He was hospitalised several times and sometimes we would be there for weeks at a time.
“Throughout these bouts of infections, he would be on strong IV antibiotics and would have a PICC line put into place.
“The first and longest hospital visit was when he was only one-and-a-half months old.
“During this stay was when his vascular specialist, Rachel Kessel at Cohen Children’s Medical Center, strongly recommended we start a form of chemotherapy.
“After seeing how his whole body swelled up and activated new cystic areas, we decided it was going to be worth a try. It definitely wound up helping shrink the cyst – leading up to surgery.”
Matteo’s parents say their little boy didn’t seemed fazed by his cyst.
Christina said: “We didn’t realise it really affected his attitude until after it was removed. He was always happy and tried to do things even if he wasn’t able to.
“Since he only had main use of his right arm and hand, he used it to do things even on his left side.
“The only way I was able to cope was knowing that I had stayed knowledgeable. I learned all of the medical terminology and made sure I was a part of the medical team myself.
“I had to find comfort in knowing that I did everything humanly possible to put together a team of specialists that would be best for my son.”
Matteo’s cyst was so large, it prevented him from wearing normal clothes – many of which had to be altered.
Christina said: “He was in age six month clothes from birth. He couldn’t sit up without the cyst being propped up. He couldn’t be picked up normally.
“His arm had very limited range of motion. His head stayed turned in one direction due to the arm and we had to watch out for torticollis.
“His balance was completely off. His rolling over and sitting up were delayed until after the surgery. There would be no way of crawling had we not done the surgery.
“Also, due to these deep wrinkles in his skin, bath time took forever. I would use 50+ cotton buds and saline to clean each fold and make sure they were clean to avoid infection.
“When he had infections, we had to avoid actual baths as well. The open lesion had to be cared for and I became a wound specialist.
“I would clean the wound, wrap it, and had to use trial and error to see what worked best. I would say I tried at least 10 different wound dressings, including diapers wrapped around him to contain any leaks.”
On 28th October 2019, at six months old, Matteo had his first surgery – a major debulking procedure.
Christina said: “Doctors were able to remove the large mass on his side and across his chest.
“They also were able to remove all of the wrinkled skin and open lesion, along with his left nipple that was in there. From sedation to him waking up was about eight hours.
“We predict the cyst was upward of 3lbs at birth – one third of his total weight.
“The cyst was much smaller at removal, due to the medicine Matteo had been on.
“It was also draining often at home and would physically leak like a liter of lymphatic fluid all over my house.
“Dr. Waner came in from Manhattan to the hospital since they had a pediatric intensive care unit.
“The cyst itself was removed by Dr. Milton Waner and his partner Dr. Teresa O. The plastic surgeon, Dr. Rachel Rutolo, did an amazing job at the plastics portion and sewing him up.”
Three months on and Matteo’s scars are beginning to heal and fade.
Christina said: “I think the surgery was worse for Franco and I.
“Matteo was out of it mostly for the first two days after surgery and then the third day he woke up smiling and his usual self.
“Everyone in the support groups prepped me and told me how resilient kids are and I had to see it for myself and boy were they right – he did great.
“Ironically, after so many long hospital stays with infection, we assumed it would be a long stay.
“We left the hospital four full days passed surgery – it was remarkable.
“We have noticed such a difference in our boy!
“He was sitting up and holding up his body just days after we got home. It was so emotional for us.
“A day after his last drain was out, he was rolling back and forth.
“He was happier than usual and this made us realise how truly uncomfortable he must have really been.
“Now, at 10 months, Matteo is meeting and surpassing his milestones.
“He is receiving physical therapy three times a week and his little arm is fully functional.
“He also hasn’t had any more infections since surgery.
“He does receive infusions monthly but most of his blood work is now within normal range.”
The family aren’t 100 per cent sure what treatment Matteo will need in the future and have vowed to take each day as it comes.
Christina said: “His latest MRI indicates that his body has lots of fatty tissue overgrowth.
“It is forming rapidly and also in the surgical area that was removed previously.
“It is very sad not knowing what the future holds.
“His arm and back still have cysts and aside from the new fatty growth, he has had two large lipomas on the other side of his abdomen.
“They may need to be removed but they will likely return – possibly with a vengeance.
“After the surgery, the removed sample was sent in for genetic testing to see if he had a specific ‘overgrowth gene’.
“I knew about the PIK gene and the hematologist assumed that was what he had – especially that his one affected arm was getting fatter than the other which is a signifier.
“I suppose it was not much of a shock, but it did sadden us to know that this meant it was going to be most likely a lifetime disease and not just removed and gone.
“It was sad to know it wasn’t a fluke occurrence and that there was an actual genetic reason – although not hereditary.
“I cannot stress enough how much anxiety I get about all of the unknowns surrounding this disease. No one has answers. There are no patterns or statistics about it because it is so rare.
“He has since been diagnosed with CLOVE syndrome and there is still so little about it and it is such a broad spectrum with no two cases alike.
“This is our life now. I wouldn’t change my amazing happy baby – but I just wish this wasn’t happening to him.
“My husband and I just say that everything happens for a reason. This whole journey has made us better people.
“We try and believe that at the end of all this Matteo will have had the best life possible and he will most definitely be someone who changes the world.
“We just don’t want him to get made fun of because he has lumps or a big arm, we don’t want him to have a complex, we don’t want him to have any limitations – it’s hard to think about all the ‘what-ifs’.”
Christina and Franco are enjoying every moment of parenthood.
She said: “Matteo is so happy all day every day. He can be wet, tired, cranky, and you can always make him smile and laugh out loud. His smile and laugh are so contagious – I love it!
“He has never had any kind of cognitive delay and he has been super alert since birth.
“Matteo takes after his daddy – he is already a little joker!
“He wants to make you laugh and acts funny and goofy and it’s just so adorable.
“He moves around now that he’s crawling and he’s always on the go – moving things, poking and prodding and being an inquisitive baby.
“He loves his yogurt lunch – he gets so mad when it gets to the end. He loves snuggling with his mama and daddy and he loves to laugh and smile.”
Christina advises other parents in a similar position to do their research.
She said: “If there is one thing I have learned going through this that I would pass on to other parents it is to get involved, do your homework and learn about it.
“Ask questions. It’s is so important. I would go to the doctors, and still do, with pages of questions in my phone notes.
“I would ask and ask to become aware and learn every aspect of my son’s health.
“I advise others to reach out to support groups because no doctor knows as much as these people going through the same thing.
“Turn to others for support because it’s not going to be easy.
“Finally, something I need to live by – take one day at a time.
“It’s the hardest thing to do, but I know it’s literally all we have to do! It’s our only option.
“There is a saying that ‘it takes a village to raise a child’ and when you have a child with a rare disease, it takes villages, communities, even other counties to raise these babies.”