On August 20th, 2013, five days before our wedding, we went to one of our routine ultrasounds. However, this routine ultrasound did not turn out to be routine at all. After an hour and a half of the technician trying to capture certain pictures of our baby boy, we were told that our son was going to be born with a cleft lip. Thankfully, this is the only deformity he has. After that ultrasound we had been sent to Elliot Hospital so that a specialist could take a look at him and then that doctor referred us to the Boston Children's Hospital.
In November, we were seen by the Advanced Fetal Care Center in the Boston Children's Hospital where they did a very extensive ultrasound and MRI to make sure that this was in fact an isolated issue. We also met with Dr. Mulliken who is a Pediatric Plastic Surgeon who specializes in cleft lips and palette surgery. He is an amazing surgeon. He is a Professor of surgery at the Harvard Medical School whoms reputation proceeds him. He has been doing this type of surgery for over 40 years and he is the only doctor that performs these surgeries on his patients.
After Brian was sent home from the hospital, he went back into the NICU because he was losing too much weight. It is normal for infants to lose about 10 % of their body weight in the first week, however, Brian had lost almost 20%. This was a direct impact of his cleft lip. He was unable to feed and thrive and so he stayed in the hospital for five days until he stopped losing weight and was able to start gaining.
On February 3rd he was seen by Dr. Mulliken. He actually had a mini procedure that day. Cleft lip babies are prone to losing baby teeth and Brian was no exception. Dr. Mulliken removed the root of his tooth so that it would not get infected and after our visit with him we scheduled his first of at least two surgeries for March 13th, and a pre-op on March 6th.
On February 25th, I received a call from my son's Pediatrician that insurance company was all of a sudden not going to cover his surgery because Dr. Mulliken is an out of network doctor.
Unfortunately, times could not be any tougher for my family, and so paying for this surgery out of pocket will be extremely difficult and will keep us in the red for a very long time. I lost my job back in August and my husband was laid off in December. My unemployment benefits run out next week, and I can't go back to work just yet because of the upcoming surgeries my son is facing, not to mention the very frequent doctor appointments he has.
The most important thing is that Brian receives the best care possible by the best doctor available. I realize that there are many other worse things that could have happened to my baby boy. However, having a cleft lip, could effect him growing up socially, and if it is not fixed to the best of its ability, could potentially develop other issues such as a speech impediment. I want the very best for my son and having his surgery done at the Boston Children's Hospital by Dr. Mulliken is what is best for him.
So I am telling you our story in the hopes that we can make this happen for our baby. I want to thank you for taking the time to read this and just know, that any little bit helps.
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- Joanna Hastings
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