written by: Marie Hatcher (Matthew’s Mother)
April 15, 2008 was the day we found out that Matthew had a very complicated Congenital Heart Defect. I was 24-weeks pregnant and was at an ultrasound without my husband Mike. I remember praying and crying a lot. Our doctor, Dr. Snyder, did a Fetal Echo that same day and told us the hard truth about Hypoplastic Right Heart Babies. He explained we would likely undergo three surgeries and advised us to do an amniocentesis to check for chromosomal disorders. Two days later, we flew to Ireland to visit my family. Upon our return, all our care was transferred to Columbia Presbyterian, NY, following a negative amniocentesis.
Matthew was born on August 6th, 2008 via scheduled C-Section. His PICC line became infected during the first week in NICU and he ultimately ended up with his first open-heart surgery on August 21st, 2008. Six days later, he had a Ladds Procedure, an abdominal surgery. He finally came home on September 2nd to two very happy older brothers, Michael and Ryan, not to mention two ecstatic parents.
Weight gain was an issue and we added polycose, human milk fortifier and rice cereal to breast milk to help with this. He gained weight slowly but there were many issues we had to also deal with. Matthew is asplenic and has heterotaxy. He had a grade IV reflux in his right kidney, which resolved untreated! His liver is midline rather than right lower quadrant. His Glenn Procedure was done on February 25th, 2009. He returned home six days later. He ended up with a right sided chylothorax and was on low fat diet and formula, Portagen for four months.
On June 16, 2010 we learned that Matthew’s ventricular diastolic pressure was high, meaning his heart beats good, but does not rest adequately. After seeking second and third opinions from Boston Children’s and Children’s Hospital of Philadelphia (CHoP), Coreg was added to the med regimen thanks to Dr. Rychik at CHoP. Dr. Rychik has seen these conditions before and had success with the right medications.
Matthew had fontan surgery on August 17, 2011 after being postponed twice due to a virus and a cold. The surgery was done off the lung heart machine and he was extubated before coming up to ICU post operatively. He had many ups and downs in the post-op period, including pain control, large right pleural effusion, fast heart rate, constipation and low potassium levels. He came home on August 26 but was readmitted on September 1 with bilateral pleural effusions and finally came home on September 6. He started Preschool on September 27th, just shy of six weeks post operatively.
We face another cardiac cath this summer before Kindergarten starts in August. I am amazed every day at the places my little man has travelled with me to. We lobbied successfully for Mandated Pulse Oximetry Screening in both Connecticut (SB 56, Matthew and Faith’s Law) and in New York (A 2316). We have delivered over 750 “Hug a Heart” Pillows to offer comfort to children at Morgan Stanley Children’s Hospital of New York who like Matthew, have to undergo open heart surgery for Congenital Heart Defects. The Organization started in honor of him “Matthew’s Hearts of Hope” has donated close to $40,000 for CHD Research in it’s short three years of existence.
He is an amazing little man and we are all blessed to have him in our lives. We are better people because of him and he inspires me every day to be a better mother, wife, sister, daughter, sister-in –law, and friend. We pray we get to keep him around but that is up to God. It has been a long two and half years since our last visit to Ireland, but we go next month again to introduce our Precious Matthew to all his Irish Relatives! Granddad gets to meet him for the first time! We anticipate more bumps in the road, but this is part of the life of a CHD family and child.
I look forward to the future with my little miracle man and his brothers and trust that I will make many precious memories if that is God’s plan. I will embrace whatever that shall be.
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