Family With Two Special Little Girls Needs Grant Money For Relief Of Medical Cost Debt
by Christi Burke
(North Andover, MA, USA)
Our daughter Alexis was my first baby, my husband's first daughter, and she was born February 17, 2009 at 5:45 pm. She was a big girl but her sugars were dangerously low, but she came up on her own.
We brought her home a week later but no more than two days later we were rushing to the pediatrician's office, she was choking on her formula, projectile vomiting and lips were turning blue.
Her pediatrician was at a loss so we switched formulas, and tried all of them till she began to lose weight so then we were sent to a specialist in Boston, a GI doctor.
There we were told our little girl was being categorized as failure to thrive, had an unknown protein allergy, and acid reflux so she was put on a prescription formula and an antacid for infants.
My husband's health insurance did not cover our daughter's medical needs, not even her formula, and because we were both working, we did not qualify for WIC or any type of government programs that would assist with the costs.
Alexis' formula was costing us close to a $1000 a month. We were getting behind on rent, bills, car payments, till it got to the point we had to cash out both of our 401Ks and use that money to pay some past medical bills and to feed our daughter and try to catch up with rent.
Things were going all right till Alexis turned 8 months old and she couldn't handle simple baby foods though we were following the instructions given to us by her specialist team.
So we went to see an allergist to see if she had food allergies, and with that test comes blood work. No more than 4 days went by when we got an emergency phone call from the Allergist.
One of our daughter's cell counts was dangerously low, 300 where it should have been almost 3000. They wanted her brought to the ER to make sure it was not the beginning of cancer.
We rushed her to Boston again, at the tender age of 8 months old, and had them do a full work up. Her count had gone up but it was only 600 so still low.
They could not find the reason behind it so all we could do was follow a protocol where she was monitored at her pediatricians and if she ever spiked a fever to bring her to seek medical attention right away to make sure her body could mount a defense against a common cold.
By the time she was 11 months old she was eating more and more foods and had been cleared to start having dairy products and foods that contained high amounts of protein but it was not the end for Alexis, and I was now 8 months pregnant with our second daughter Adriana.
January 13th we picked her up from a baby sitter who had watched her for us for a few days while I was tending to my step son in the hospital, and she was doing great running around and eating.
The following morning she woke up screaming and very lethargic. She drank almost 70 ounces of fluid in almost one hour and she was just sitting there non responsive just drinking and drinking.
As we have a son who is a Type 1 diabetic and I had gestational, I checked her sugar and the meter read 19. I thought it couldn't be right, that it was dangerously low. I tested the meter, and then retested her and the sugar was now down to 12.
I gave her pure juice and we rushed her to the primary where they checked her sugar and it was 21 and they called an ambulance and had us rushed to our local hospital where they were treating her with glucose through a pacifier and IVs.
Because she was all over the place number-wise she and I were transported to Boston Children's where we remained for 3 days. They ran all kinds of tests but could not find a reason as to why her sugars had gone so low or any condition that would match it.
So we were sent home to watch her and check her sugars if she seemed off in any way, and for the first week she was in the low 60s but then she evened out for a while.
At this point our second daughter Adriana was born on February 8th, at 8:15 am of this year. Her sugars were lower than her sisters and she did not respond to feedings right away. She almost ended up in special care until we asked them to give her one more hour, when she finally came up to a safe level!
However when the nurses checked her the following morning they heard a heart murmur and had an EKG sent down to Boston Children's and we were sent home a few days later.
We took Adriana to see a cardiologist at Children's and they heard nothing and the EKG looked good so they felt it was a valve not closing properly when she was first born which, according to them, is common in infants who are large at birth.
At the end of April of this year Alexis again woke up and couldn't stand in her crib, and all she wanted to do was drink and drink and drink. I checked her sugar and the meter read 54.
I gave her sugar water, it went up but 20 minutes later it came right back down. She passed out for a few minutes so I called 911 and by the time the EMTS showed up she was slightly awake. We brought her to the local hospital where they rechecked her sugar and their meter read critical low, which means it was below 20.
I handed them the letter from Boston stating they had to draw critical labs but they began to treat her as a brittle diabetic, as her sugars were really high, then normal, then low, and then spiking again.
Due to her having an issue of passing out even there they had a special transport team come get us and bring us to Children's and were admitted to the ICP floor for three days, still they had no explanation.
They did notice in her lab work up that her neutrophil count was still very low and she was severely anemic despite her diet and everything she ate, so we saw a hematologist within a week of discharge. He sent out a few genetic tests and we were told to sit and wait to see what came back and then we would figure out a game plan.
However Adriana, on Mother's Day weekend, was non-responsive on a Saturday morning and when I could not get her to fully wake up I checked her sugar and it was 40.
It took over an hour and a half of coaxing her to eat and feedings before she cleared the 70 range but Children's wanted her admitted for 24 hours as they were afraid she was following in Alexis' footsteps with low sugars with no real reason behind it.
We stayed there for 24 hours and all they could tell us was that all her blood cell counts were normal and she looked healthy. Their labs showed nothing else for them.
We were sent home and have been told to check her sugars every day 5 hours after her last bottle of the night until her follow up in September.
She has had a few more lows, and a few times where she was low and we would feed her, wait 30 minutes, and her sugars would go down rather than up so we had to coax her to eat some more.
Now they will be hospitalizing her in September for almost 24 hours to attempt to find a reason behind these issues.
In June Alexis started having a hard time walking, always stumbling. Her legs would just give out. Picking up toys she had done a million times, were now cause for concern as she would lose her balance and fall on her face.
As there were more tests pending for her we called her hematologist, who wanted us to bring her to the ER at Children's to have a CAT scan and blood draws. Her counts were still low, but they found an Arnold Chiari malformation during the CAT scan.
This is a rare condition but a small part of the brain has seeped into a hole where the skull and spinal chord meet and is now applying pressure to her spine and obstructing the flow of fluid.
This accounts for her mood swings, headaches and coordination issues, and now she faces major surgery this Friday to decompress and relieve the pressure. We are told that this should remove all symptoms related to this such as the coordination, balance, walking and what not, but no guarantee that it will never return, especially in the first 6 months.
Even once she comes home she has follow up MRIs to make sure things are going all right and after the new year we will know if she needs another surgery. However this does not account for her drinking, eating all day, and not gaining any weight in almost 5 months now.
We have exhausted all of our reserved funds. We are facing the possibility of eviction due to being behind on rent and all of our bills.
My husband is now out of work to help care for the girls and I get unemployment benefits and have returned to work part time but a total income of $1200 a month is not enough to cover our rent, car payment, car insurance, food, and never mind the costs of going back and forth to Boston for the last 18 months and how much it costs to eat while there.
All we want is to be able to take care of our children and give them the life they deserve. Alexis has been through so much in such a short amount of time. She deserves to have the best life we can offer, and we can barely do that.
Adriana has been through almost as much in a shorter amount of time and despite all of this our girls are happy and loving girls who don't know how to be anything other than that.
We want to be able to keep a roof over their head, catch up on the bills, and give them a good holiday at Christmas time and start college funds for them, but we need help, we can no longer afford to do this alone.